Ice Bucket Challenge for Annabelle's Challenge
22/05/14 News Release
Annabelle’s Challenge is UK’s newest charity
The UK has a new charity with a five-year-old little girl from Bury at its heart.
Annabelle’s Challenge now has official charity status to mark this month’s Ehlers-Danlos Syndrome (EDS) Awareness Month, after a tireless 12-month campaign by parents Sarah and Jared to raise awareness of the vascular form of the disease suffered by their daughter Annabelle ‘AJ’ Griffin.
Vascular Ehlers-Danlos Syndrome (VEDS) is the most serious form of EDS. A rare genetic condition which causes collagen deficiency, it puts Annabelle at daily risk of the spontaneous rupture of her internal organs and arteries. She was diagnosed in December 2012 aged three.
Jared says “Annabelle has been so inspirational and is the key driver behind our motivation to help others and we were delighted when our trustees offered to volunteer their time and skills to help set up and run the charity going forward, enabling us to officially register Annabelle’s Challenge.
“With the strength and support of our family and friends we have gained significant momentum with raising awareness which can be emotionally draining for us as parents trying to manage each day as it comes, knowing how fragile Annabelle is. She bruises very easily and the slightest knock could end up in a visit to A&E.”
Jared added: “The worst part of the condition is not knowing when a significant medical event could take place, she could simply be sat watching TV and without warning have a spontaneous rupture of her internal organs which could kill her.”
Earlier this year Annabelle suffered from an accident at home, a trauma injury to her nose required an emergency visit to A&E and a subsequent operation requiring plastic surgery under general anaesthetic.
Jared says: “It was a very tense and emotional time for us as we were unsure how the operation would go because her skin is so fragile, the medical team had knowledge of Ehlers-Danlos Syndrome but not Vascular type. Unfortunately not many medical professionals are aware of VEDS – and this prompted our decision to register Annabelle’s Challenge as a charity.”
Jared and Sarah also have two older sons, Ryan and Oliver, who have been helping the charity with fundraising and awareness events at Bury College and Tottington High School.
Annabelle’s Challenge will work with the EDS Diagnostic Service based in London and Sheffield to help provide support to newly diagnosed patients. It will also be raising funds to further the education of VEDS within the medical profession and general public.
Trustees behind the new charity are now calling on local people in Bury and beyond to come forward to help with fundraising and share their skills to help expand their work. Jared says: “As a small charity the trustees will need volunteers to help with fundraising and awareness campaigning and we are very grateful to everyone in the local community who have supported us so far helping us to raise £15,600 over the past year.”
Sarah has already started working as a volunteer Parents Coordinator for Ehlers-Danlos Support UK. She says: “We will continue to support and work with EDS UK however we felt the time was right to register Annabelle’s Challenge. Our charity as a whole will add to the existing body of knowledge relating to VEDS and will also provide particular benefit to those who are directly and indirectly affected by a diagnosis of the condition, and health professionals who work in this area.
“The ultimate aim of our charity is to reduce the number of people being undiagnosed or misdiagnosed by increasing public awareness and to encourage the medical profession to progress further with research into finding a cure”.
Latest charity events include a team of volunteers and trustees donning their running shoes for the recent Manchester Electric 5k run and Great Manchester 10k run raising £1,000. The family is also hosting their annual charity ball on Friday 6th June at the DeVere Village Hotel Bury in aid of EDS UK. They have a limited number of tickets available at £30 which includes a three course dinner, live entertainment and charity auction.
For more details go to annabelleschallenge.org
02/04/14 - Trewan Sands Childrens Trust
An amazing day for Annabelle supporting Trewan Sands Children trust today for OnsieWednesday Autism Awareness #WAAD2014and she loved meeting all the team and their supporters.
28/03/14 - Tottington Spring Gala
Check out AJ & brother Oli promoting the Tottington Spring Gala with head boy Ben Draper and head
girl Hayley Edwards in today's Bury Times. The event takes place on Sunday 6th April at Tottington High School, Bury.
Fantastic opportunity for us to raise awareness of EDS & Vascular EDS and also support our local community and charities.
26/03/14 - EDS UK Parent Coordinator
We are delighted to announce Sarah Griffin has taken on the role as Parent Coordinator for EDS UK members. Sarah is available to support and advise members.
13/03/14 - Mayor presents AJ with Best Of Bury award.
Well Done to AJ collecting her Best Of Bury 'Local and Loved' award tonight at Barista Cafe Bar. As always AJ goes up for her award on her own raising awareness of EDS & Vascular EDS.
During February we entered The Best Of Bury Local & Loved Awards 2014 and delighted that we recieved over 160 reviews of Annabelle's Challenge. We have also been awarded 'Highly Commended' and finished 4th in the UK in the national charity category and 9th out of all Bury businesses which is amazing.
09/02/14 - Annabelle's Challenge Crystal Ball
Our annual Charity Ball is the key fundraising event for Annabelle’s Challenge raising awareness and funds for EDS.
The 2014 Crystal Ball will take place on Friday 6th June at the De Vere Village Hotel in Bury and Annabelle’s Challenge invite you to get glammed up and join them for a Magical Evening of live entertainment.
Guests at the black tie event will enjoy a welcome Buck’s Fizz reception and a delicious three course sit down meal and you are sure to be amazed by the line up of live entertainment on offer.
Tickets to this event cost £30 per person, £300 for a table of 10 and are limited. It is advisable to book asap to secure a place as previous years have completely sold out extremely quickly.
Annabelle’s Challenge is a local charity hosting this event to raise awareness and funds for UK charity Ehlers-Danlos Support UK.
During the evening we will be holding a live auction and silent auction with raffle prizes also available.
21/01/14 - AJ's Diagnosis
We are often asked how AJ was diagnosed with Vascular EDS. Diagnosis of the Vascular type EDS (also known as type IV and VEDS) is usually determined by carrying out a skin biopsy. This was carried out on 17th October 2012 at Sheffield Children’s EDS clinic.
We met with Dr Sobey and the team and during the consultation photos were taken of AJ and we discussed our family history and many other details. It was hard to concentrate as AJ was in her usual full on hyper mode wanting to play and explore. After the consultation we then waited in the reception area for a short while before being called for AJ’s skin biopsy in the treatment room.
Due to the size of the treatment room it was decided that I would go in with AJ for her biopsy, AJ was in high spirits laughing and smiling and little did she know what was about to happen. We held each other’s hand just as the biopsy started on her upper right arm and within seconds AJ instantaneously squeezed my hand so tight (the tightest she has ever squeezed my hand) with tears streaming down her face because of the pain, it was heart breaking to watch and I said to her “We are so sorry for the pain but this will lead us to hopefully finding answers for you” this was an emotional time for all of us but had to be done.
As parents we knew this could be a turning point for us all as a family, we were expecting the results from the biopsy to take around six months however just over a month later early results came through indicating that further testing was to be carried out. We received a call from Dr Sobey’s team requesting we meet up to discuss the results, the appointment was set for end of clinic on Wednesday 19th December 2012, I had a feeling this could be bad news. Just a week before Christmas, we received the devastating news that confirmed our daughter has Vascular Ehlers-Danlos.
I remember that day so vividly, the moment your told your life is about to take on a challenge and our world would change forever, it hit me hard when Sarah instantly said to Dr Sobey “what is her life expectancy” this is something no parent can prepare for, shock is an understatement. I wouldn’t wish this on anyone.
We left the hospital with a letter explaining VEDS, the wording is so direct it puts into perspective how fragile life is for sufferers like AJ who have Vascular EDS. Vascular EDS is a genetic condition caused by an alteration, also known as a mutation in a gene called COL3A1. This gene is the instruction for making collagen type III. When this gene is altered it causes a lack or deficiency of this collagen. This leads to disordered packing of collagen fibres making the connective tissue less effective, particularly in blood vessels, hollow organs and the skin.
One thing that has not changed, we still have the same Princess AJ we had before diagnosis and at least we can now plan ahead for her knowing she has VEDS. Thank you to our medic team for their continued support and the genetic counseling provided to help us keep us all on track and focused.
10/01/14 - Bury Times
Today's Bury Times features the story of Emilia and AJ working together to raise awareness of EDS. AJ is Emilia's biggest fan and will be supporting her with her music.
25/12/13 - One year on
It has been a fantastic Christmas Day for all of us, this time last year we had to put on a brave face trying to come to terms with AJ's Vascular EDS diagnosis only a week before Christmas and to be honest we can't remember much of last year as we were in shock during the festive season.
Annabelle's Challenge was just an idea brought on by the lack of awareness of Vascular EDS and EDS in general and we wanted to do something positive, in early January Annabelle's Challenge with Vascular Ehlers-Danlos Syndrome was created and the journey began.
The past year has been a roller coaster of emotions, stress, concerns but above all we have remained strong, determined and focused to help Annabelle's Challenge raise awareness of EDS whilst also charting our daily battle with AJ's Vascular EDS.
During the year we have received loads of fantastic support and fundraising for Annabelle's Challenge and Ehlers-Danlos Support UK and we are extremely grateful.
Going forward into 2014 we have plenty of fundraising and awareness activities lined up and the first begins in January with a meeting scheduled with our MP to discuss how we can further progress Annabelle's Challenge to help raise awareness.
Another exciting development for Annabelle's Challenge is the mutual support to raising awareness of AJ's Challenge and EDS with singer / songwriter Emilia full details will be shared in due course, in the meantime please can you Like and Share EMILIA page www.facebook.com/OfficialEmilia this will help us jointly raise awareness of EDS, Emilia's debut single will be available on iTunes 13th January.
Please support Princess AJ and Princess Emilia and like her page now, our two Princesses are on an exciting journey ahead and really appreciate your help.
Thank You and Merry Christmas from the Griffin's, AJ & Emilia.
19/12/13 - Personal message from the Griffin family
It is exactly one year on since we were at the EDS Diagnostic Centre at Sheffield Children’s Hospital being told the devasting news that our daughter had been diagnosed with Vascular Ehlers-Danlos Syndrome, our lives changed in moment trying to come to terms with the fact AJ has a life-threatening and incurable condition.
We can remember that day as clear as if it had just happened and even though the last 12 months have been a roller coaster ride for our family and for Annabelle we have to keep focused and live every day to the best we can for our own sanity and for Annabelle.
Annabelle’s Challenge was created in January of this year within weeks of learning that AJ had vascular EDS this was done out of frustration by the lack of awareness of this condition and our desire to help others by sharing our journey with vascular EDS and her added complication of Von Willebrand.
We will share some of our highs and lows throughout the day and also on twitter with the hash tag #VascularEDS, please feel free to share any of our postings to help raise awareness of vascular EDS.
Thank you so much to everyone for being part of Annabelle’s Challenge.
Jared, Sarah, Ryan, Oliver and AJ 'The Griffins'
17/12/13 - Emilia supports Annabelle's Challenge
Annabelle’s Challenge is delighted to have the support of singer / songwriter Emilia, winner of AAGM 2013.
Annabelle was recently on stage with Emilia to switch on the Christmas lights at the Mill Gate shopping centre and we look forward to announcing future events with Emilia.
For more information on AJ & Emilia CLICK HERE
03/12/13 - Update on Annabelle
Great news! Annabelle's surgery went extremely well and she is through recovery and has been sat up in bed eating sandwiches and jelly! She is now sleeping and in observation over night.
Very tense and emotional time for us today having to make decisions on how best to proceed with repairing AJ's nose, we were unsure what the outcome was going to be but we all stuck together and along with the medics we preceded to the theatre for 3.30pm and the operation took over an hour. This was a very stressful time waiting for news on AJ.
During the morning we were fortunate that Prof David took time out to come and see us to put our minds at ease and we also had brilliant support from Dr Owens, Consultant Anaesthetist who ensured AJ's well being was paramount insisting the procedure went ahead whilst all the key consultants were to hand and all eventualities were covered off.
The risks and concerns with surgery was Annabelle could have suffered from extensive blood loss because of the Von Willebrands or her underlying skin to fragile to repair or our worst fear that she could of woken up during the procedure which has been known to happen with VEDS sufferers. Thankfully neither of these happened to her.
AJ has always displayed immense courage and even gave us all a smile throughout the day. The plastics team have done a fantastic operation on her cute tiny nose and hopefully will be unnoticeable from any scars. The stitches are in place and have held very well and the skin has come together ok something we were all very concerned with because of hers VEDS.
The surgery team were very knowledgeable about EDS but not Vascular therefore surgery was delayed until every part of the medic team were updated and confident to proceed, thankfully they pulled it off and we are so proud of the team, it was a complex procedure as we all ventured into unknown waters with surgery on a VEDS patient that also sufferers from Von Willebrand.
Most emotional part of today; not knowing what the outcome would be for AJ. Most proud moment; seeing AJ come round in recovery and without to much delay the smile returned!
Our Princess EDS warrior is a fighter, a zebra that is strong and determined, child of courage!
We sincerely thank everyone for your kind messages, support and prayers which is welcomed during our difficult time dealing with this and well done to Ryan and Oliver for coping well together over the last 24 hours.
Also a big thank you for all the well wishes from the staff at Tottington High School and Woodbank School.
Well done to the Team at RMCH, you stepped into the unknown with us today and together we supported each other to the end result which was a success. We are so proud of our NHS.
Love & Thanks from AJ & The Griffin Family
VEDS. The Early Signs
For any family this would be very difficult to handle knowing your baby has a medical condition and at this early stage an unknown condition yet to be diagnosed. The bruising is a daily occurrence and quite often unexplained. It was upsetting to witness people pre-judging in the streets or even within A&E and we knew we had to keep fighting for answers, unfortunately for some families the sight of these bruises would trigger the intervention of social services and possible removal of a child due to suspected child abuse.
When AJ was only 12 months old she had an unexplained bleed from her right eye, no trauma impact that we were aware of so could only suggest it came from her knocking her head on the side of her cot? The blood seeps from her eye, covers her cheek and cot, so you can imagine how frightening it was for Sarah when she went into her bedroom to do the normal checks to witness our little girl experiencing these issues, something we expected and assumed she would grow out of.
Looking back at these photo’s is upsetting for us however it all kind of falls into place, the lead up to our early diagnosis of VEDS which only came about from our strong determined challenge to find answers for our daughter. We have also been blessed to have a great medic team based at Royal Manchester Children’s Hospital and the support of three very special consultants; Dr Will, Consultant Haematologist, who looks after AJ for her Von Willebrand, Dr Clayton, Consultant Dermatologist and Prof David, Consultant Paediatrician who oversees AJ’s care for the VEDS.
However it was Dr Clayton who suggested AJ could have a form of EDS and referred us for testing, our gratitude goes to Dr Clayton for helping us achieve an early diagnosis of VEDS and whilst it is not the diagnosis anyone could wish for it does give our family and AJ the chance to change how we plan for the future in order to protect AJ as much as we possibly can. Thanks Dr Clayton, you are simply the best!
Our advice - When seeking answers to unexplained bruises/injuries never give up, keep strong and push for answers, even if some tests come back clear make sure you push for more. Annabelle had originally had lots of blood tests carried out at Rochdale where the staffs were great but all the blood tests came back normal.
If it wasn’t for us pushing for answers we would not have been transferred to Manchester for further more in depth tests that Rochdale could not provide. Maybe we were lucky to have a fantastic medic team at one of the leading hospitals in the country who listened to us and took our concerns on board. Many people we hear from haven’t managed to get this far where it may have resulted in the children being taken away from the parents or a diagnosis given to late after a significant medical event.
EDS UK Conference
Fantastic day at the EDS UK conference for Vascular & Classical Types. We had the opportunity to meet some amazing people! Well done to Lara and the EDS UK team & docs for a brilliant conference.
The doctors explained in detail more about genetics and diagnostic, a lot to take in but over the coming days we will try and share the latest updates we received at the conference.
The workshop sessions were truly humbling and emotional experiences listening to the personal accounts of life living with VEDS from those who are affected by this just like our AJ and Ted. You guys are so amazing and we have the upmost respect & empathy for what you have been / are / will be going through but the overriding defining points we have taken from the conference is how positive and focused you are, yes we need more research, yes we have to fight for better understanding and in some cases a significant improvement with awareness in particular medical attention & support however from what we have witnessed you are all so inspiring giving us the drive to continue with the challenge to raise awareness and hopefully one day we will find that cure.
You are all amazing! Please stay focused as best as you can.
Love, Best Wishes & Gentle Hugs xx
Jared & Sarah
Charity Ball Plea
We are appealing for support for the charity event which will raise funds for research into a life-threatening condition which affects our four-year-old daughter Annabelle. We have organised a fundraising charity ball at the Albert Halls in Bolton on Saturday 26 October, but we now fear this year’s event may run at a loss because of unsold tickets.
Sarah and Jared Griffin are urging people to attend and also appealing to local businesses to donate goods and vouchers for auction and raffle prizes, which will help to raise much needed funds on the night of the ball in aid of UK charity Ehlers-Danlos Support.
Annabelle suffers from life-threatening Vascular Ehlers-Danlos Syndrome (VEDS) just a slight knock could mean a hospital visit and she is at risk of possible spontaneous arterial or organ rupture which could prove fatal.
Specialists cannot predict how long Annabelle has to live and we are raising awareness of the condition through Annabelle’s Challenge with money raised at the charity ball going towards research.
While we have had a great response and sold many tickets, we still have some way to go to fill the capacity of 220 seats, disappointingly it means that we could be looking to make a loss on the event which is soul destroying when we are trying to raise money for research to hopefully one day benefit Annabelle.
Annabelle’s Challenge was set up soon after Annabelle was diagnosed with Vascular EDS in December 2012 when she was just 3 years old and aims to raise £10,000 in funds this year. We hope that the 2013 Charity Ball will bring in a significant portion of this target.
We’d love it to be a sell-out event, it’s going to be such a fun-filled evening with live music provided by BBC The Voice finalist David Julien and it’d be a great way to impress clients or treat staff or simply have a great night out all for a good cause close to our heart.
Tickets to Annabelle’s Challenge Charity Ball are £25 and the evening includes a drinks reception, hot buffet meal, live band, magician, live auction and a raffle. Tickets can be purchased online at www.annabelleschallenge.co.uk
If you or your business would like to get involved in the Charity Ball please call Sarah Griffin on 07812 714744 or email firstname.lastname@example.org
When they seek an answer regarding their child’s pain or other symptoms, parents may hear they are simply “overprotective” of their undiagnosed child or worst still
may be suspected of child abuse because of frequent bruising or dislocation.
From being a baby it took nearly 4 years of hospital referrals and testing before Annabelle finally receiving a diagnosis. On Wednesday 19th December 2012, a week before Christmas we received the devastating news that Annabelle has Vascular EDS, the most serious form of Ehlers-Danlos Syndrome. It is life threatening and incurable.
Our diagnosis breakthrough only came about when Annabelle’s dermatology consultant Dr Clayton examined her and because of the translucent skin and extensive bruising (you can see her bruises clearly on her legs in the photo) he mentioned that it could be Ehlers-Danlos Syndrome, a second opinion from his colleague confirmed Dr Clayton’s suspicions referring Annabelle to the EDS diagnostic centre at Sheffield Children’s Hospital.
EDS Awareness? Fortunately for Annabelle, Dr Clayton's colleague had chosen a rare condition as an assignment during his early medical training, that rare condition was Ehlers-Danlos Syndrome! The incidence of Ehlers-Danlos is estimated between 1 in 5,000 making it extremely rare with a universal lack of understanding and awareness of the syndrome in medical circles at all levels.
Raising awareness of EDS and in particular Vascular EDS is essential for Annabelle’s Challenge and you can help us by liking & sharing this post with your friends, this will help us raise awareness making our Invisible, Visible.
AJ's First School Day
Today was AJ's first day at school and here she is in her new uniform & matching pig tail bobbles. AJ's one to one carer was at the door to greet & settle her in, all the medic info on AJ are on display around the classroom, very supportive school. She's had a fab first day.
Fitness fanatics take on Tough Mudder for four-year-old Annabelle Griffin.
The Bury Times this week featured the Tough Mudder team 'Blood Sweet & Stupidity' who are looking for fundraisers to join the team for October's big assault.
To view the story CLICK HERE
Father & Daughter Time
When this photo was taken back in 2009 it captured the moment of a proud father with his beautiful daughter looking into each other’s eyes, our little princess AJ. We knew she was extra special and now 4 years on is our special EDS awareness warrior. Stay strong everyone and let your hopes, not your hurts, shape your future.
David Julien to perform live for Annabelle's Challenge
We are delighted to announce David Julien from BBC's The Voice will be performing live at Annabelle's Challenge Charity Ball in October.
Busy Week - Wedding & Hospital Appointments
6/8/13 - Ryan Griffin
Life with Annabelle – My Story
Well ermm where do I begin? Do I start on how I felt when I found out the news that my four year old sister has a very rare condition called Vascular Ehlers Danlos, or how life is at the moment? I think starting how I felt when the devastating news came will be a good start.
So yeah, how did I feel on 19th December? I remember waking up at my normal time at six in the morning getting myself for school and I knew something was up, when both of my parents were also getting up. They normally stay in bed till half seven but that day was different.
I asked my mother why she was up so early and her response was that they had the important meeting about Annabelle on where I didn’t need to worry. Time came for me to leave for school, on which I did as it was Examination Mock week.
I remember getting a text message from my mother on the way to school saying, ‘Good luck on today’s mock exam, don’t worry about bella, everything will be fine.’ But we all get that feeling that it won’t fine even if it was and I got that feeling.
Luckily I was able to move Annabelle’s important news to the side and I was able to complete the exam with no worries, but after that I wasn’t my normal self and my teachers/friends could see that. After I finished school, I texted my mum to try and get more information but she didn’t text back. So I got home and like every school student, I threw my uniform in the wash and got changed, and got myself a packet of crisps and sat down to watch TV.
Time went by and I got hungry and got to the point to text the parents asking them to pick a pizza up but once again no reply and that was strange to say it was about 5:45 in the afternoon. It got about 6:15 and the door alarm went and Annabelle came running in with the quietest parents ever. My dad turned the TV off and gave both me and my brother information sheets about Vascular Ehlers Danlos, he then told us the news on which during that time I looked at my mum and she started to cry. She cries at the littlest things on TV too seeing me in my high school uniform in year seven but seeing her cry at that time, I knew something was up and I felt like I lost everything. I was heartbroken, annoyed, angry and many other things, I personally thought God was punishing me for something.
I mean I hardly cried that year but just under the first twenty minutes of
getting the news I was swimming in my own tears I was that upset.
It took a while to sync in but we finally got around knowing that we cannot do half the things we would like due to Annabelle’s condition. It’s an awful feeling knowing that she can pass away any second as something in her body could rupture and that we can’t do things like go on an airplane due to her blood pressure or going on rollercoaster and many other things. To be honest we could sense there was something wrong as she got little bruises from the slightest of things but none of us thought it was going to be as bad. My father changed and become more protective over her and so did my mother, but it affected my mother more as she had to stop working, as she needed to be on standby 24/7. Mine and my brother’s life changed, on where we can’t play football with her or go to the park on our own as well as not being able to go on a trampoline with her.
When you see my little sister, Annabelle you would think hang on a minute there is nothing wrong with her, she is normal, but once you see the bruises she gets and you actually look at her eyes, lips, ears and chin, you will find that she isn’t. People who have Ehlers Danlos have small ear lobes, prominent eyes, thin lips, small chin and even a narrow nose.
Annabelle is quite a character getting me and my brother told off as well, she winds us up. My father and her have their own saying, which always works unless she wants something from my father and that is, ‘What Bella wants, Bella gets’ She is such a lovely girl though and it’s really upsetting that she has been diagnosed with Vascular Ehlers Danlos. To be honest I think she is lucky on being diagnosed so early in her life, as it has let us start raising awareness and we hope that there will be treatment soon but it’s unlucky as she can’t do things like normal girls. She won’t be able to have her ears pierced, she can’t have tattoos, she won’t be able to have children, she can’t go abroad unless we drive down and she can’t be as active as other children, as she has to have a rest or her legs start to hurt. Overall, when the news hit that Annabelle has Ehlers Danlos, I was angry, upset, scared and shocked and I felt like I couldn’t do anything to help, but because of my family and friends, I have done what I can and will do more for Ehlers Danlos Support UK and Annabelle.
I personally didn’t think I would do the Manchester 10k Run or help around during our Charity Ball or even get through the raise awareness month in May but with the help of family and friends, I did and I want to say thank you for all your support and help you have done. You honestly don’t know how much it means to me as well as the Griffin household. Thank you.
AJ sings 'The Cure'
We had a fantastic weekend relaxing and playing in the park, walking the dogs. Cuddles fell into a pond and popped up black!
Highlight of this weekend was this emotional song 'The Cure' written by Kitty Richardson sung beautifully by our Princess AJ
We have just passed the 5,000th milestone of unique visitors to this website which is fantastic in just 2 months from launch, hopefully more EDS warriors on
AJ has had a 'weekend off' just chilling out and playing, she also had a few mentions live on radio on Sunday morning which was great to watch her dancing around and listening to the show. (Sorry even the pigtails have had the weekend off).
An emotional moment on Sunday was watching AJ sing Kitty Richardson's song The Cure, AJ loved being with Kitty last weekend in the EDS choir and she loves her song.
EDS UK Kids Choir
Yesterday was a great day; we travelled down to London to the Sylvia Young Theatre School to support EDS UK and the kid’s choir that assembled to record a music video with Kitty Richardson, a 12 year old fellow EDSer who wrote the song ‘The Cure’.
AJ and younger brother Oli took part and the studio session was brilliant although very emotional to watch a group of kids doing an amazing singing session knowing they all have EDS, it was especially touching and more upsetting for us because Annabelle's Vascular type is so rare and we love her so much for taking part.
The recording session opened up with a personal video message from international music sensation, Katie Melua helping to motivate the choir. AJ even got a retweet from Katie to 22k followers so it was a good day for EDS awareness.
The video should be out in a few weeks and will feature on the new look EDS UK website which goes live soon. You can download Kitty’s song from itunes and all proceeds go to EDS UK https://itunes.apple.com/gb/album/the-cure-single/id659936326
Well done to all the EDS kids & Kitty Richardson!
Mother & Daughter Bond
Yesterday we posted this photo of Annabelle with Sarah and added a few nice words to explain the bond they have between them and we wanted to raise more awareness of Annabelle's Vascular Ehlers-Danlos Syndrome, it was amazing to see that one of the 'shares' from her page led us to this incredible woman in Ireland, Aimee Foley.
Aimee is 26 and lives in Ireland, in this documentary video she explains her life with EDS and the problems she is facing with the Irish goverment refusing to fund her treatment in London.
AJ's had a fall today
Not the best start to the weekend! Accidents will happen and fortunately AJ suffered from a fall this evening.
Tranexamic Acid has been given and apart from a few cuts and bruising AJ should be ok.
We know it's always great to see a smiley AJ and this photo just shows how resilient she is and we are so proud of her.
Annabelle's Challenge Focus
It’s hard to believe that only 6 months ago AJ was diagnosed with Vascular Ehlers-Danlos Syndrome and taking family time out last week was great, we had a fantastic vacation in Wales with walks to the beach and the Great Orme and plenty of swimming in the pool and relaxing.
Despite taking a well deserved break we can’t get away from the fact our little princess is at risk of blood vessel aneurysms or ruptures to her large blood vessels or major organs therefore we will always continue to prioritise raising awareness of EDS and funding for research & development in the hope that one day a cure is found.
Earlier this week we had a meeting with Bury Third Sector Development Agency which is a charity to help support and develop third sector organisations in our home borough of Bury, during the meeting important topics were discussed on how Annabelle’s Challenge could be better utilised for the benefit of our local community in addition to our existing support of EDS UK.
We have decided that the best way we can progress with Annabelle’s Challenge is to broaden our focus and support to benefit as many people possible who are suffering like our Princess AJ.
We are currently working on a project that will see us focus on our local community by helping families who are suffering from EDS & Hypermobility, part of this project is to include the utilisation of our local health care and the newly formed Clinical Commissioning Group. We will update as this develops further.
Thank you to everyone for your continued support.
Vacation comes to an end
The vacation trip to Wales is sadly over and back to home, work & school. We had an amazing time and appreciated family time together. We were blessed with decent weather and Annabelle enjoyed swimming, going to the beach and playing crazy golf at the top of the Big Orme.
We are now planning our next awareness campaign for EDS & Hypermobility.
I took this photo of AJ at the top of the Big Orme, it was a nice sunny day although a little windy.
Today has been really special spending Father's Day with Sarah, Ryan, Oli & AJ. This morning we enjoyed swimming in the pool and during the day we visited the beach. Father's Day is always a special occasion and more so today following AJ's diagnosis in December and the busy month of May's EDS awareness month.
Happy Father's Day!
AJ & the family are so looking forward to a well earned vacation, it is our first break away since AJ was diagnosed with VEDS in December.
May's awareness campaign was hard work for the family and so far the amount raised is £6,000 ($9,400) which is amazing.
Thank you to everyone who donated money, gifts, prizes and their time which is much appreciated by us all.
Sunny Family Weekend
It's been brilliant this weekend with the hot sunny weather and family time was great with a Christening to attend and a BBQ with friends. AJ loved splashing around in the pool and playing with her friends. Let's hope the sunny weather is here to stay.
Family Focus Time
It's been a relaxing type of week so far after the full on month of EDS awareness and we are adjusting to a slightly different focus pattern which now includes AJ, Ryan & Oliver to ensure our family unit remains strong ready for our vacation soon.
Ryan is currently doing his final exams at high school and we are wishing him the best of luck for a great result.
AJ had another swimming lesson today with her coach and we are pleased that she is improving every time however she still hasn't been signed off for her 5m award yet, today she so nearly achieved it but fell short due to tiredness.
Prayers for Princess that she will overcome this and get her 5m award soon.
EDS Awareness day required every day, it's so cruel !
Annabelle's Challenge Charity Night Raised over £3,100
What an awesome night we all had raising over £3,000 / $4,700 for Annabelle's Challange & EDS UK. During the night we had the live auction mixed in with raffle prizes, entertainment with Michael Buble tribute act and dancing into the early hours.
Thank you to everyone who attended and supported the event, special thanks to Gregg's the Bakers for kindly donating and baking the pies with only 24 hours notice.
Big thank you to all the local businesses who donated prizes and an even bigger thank you to all the folks that helped make this a party to remember, not bad with less than two month's planning.
Charity Auction Day
Thank you to everyone for supporting the auction night and purchasing tickets, we have sold all the tickets now and are looking forward to a great night from 7pm. Still plenty to do so will speak later at some point.
It's been a very busy week finalising the charity event and finally we have almost everything in place, prizes, people, venue, entertainment just need to sort the catering today. Tickets virtually sold out so here we go for a great event!
Manchester 10k Run
Well it's been an amazing day from rising early to be in Manchester for the run with our team mates from RRG Toyota. We were concerned if AJ would be up in time early to set off to Manchester City on the tram but as always our star EDS awareness warrior did us all proud and enjoyed the full day ahead.
Very tired now and aching big time, I achieved the 10k (6.5 miles) in 1hr 03 mins and Ryan managed it in 1hr, great result from everyone today! Thank You
EDS Family Spring Fete
Today was a really fab day spending quality time with what i can only describe as 'extended family' and AJ and the rest of the family enjoyed today. I'm exhausted now after a day of travelling from Manchester to London and back and now have to rest ready for tomorrow's Manchester 10k run for EDS, update's tomorrow folks x
Hi Everyone, it has been a very busy week with AJ and Sarah visiting many local businesses raising awareness and meeting some very generous business owners who have kindly donated some great prizes for the upcoming charity event on the 1st June. Limited tickets are still available to purchase online and the event promises to be a fantastic night with a target of £3,000 to raise on the night.
Yesterday AJ attended an appointment at the RMCH hospital for bloods to be taken from AJ, a specialist machine was sent up from Gt. Ormond Street Hospital to carry out blood tests with the results expected in the near future. AJ was so brave as usual with 4 injections in total, one of which did not go to plan and the white linen was soon red with blood! AJ took it in her stride and we await the results from the Hematology team, Sarah said that Dr Will and his secretary, Nicola was brilliant with AJ. Thank you!
Tomorrow we are setting off to London for the EDS UK Spring Fete at Watford Grammar School for what is sure to be a fantastic event, we will be there with the EDS awareness car and Princess AJ, so if you are attending please do pop over and say hello, we are looking forward to being there.
Sunday it’s the Great Manchester 10k run and a team of runners from RRG Group along with me and Ryan are out in force to raise awareness for EDS UK and fundraise as much as possible to achieve our target of £3,000. If you would like to support our 10k run please donate on the events page.
We’ve had plenty of activity on Twitter recently with some retweets reaching over 400,000 so I would like to think the awareness is doing what is intended and making more people aware of EDS. You can follow AJ’s updates @AJsChallenge
If you would like to attend the charity night please get in touch, it will be a great night and we have some fantastic hotels nearby which are good value and you could make a weekend of it and tour the many attractions around Bury and Lancashire.
Thank you for your support and let’s keep on making the invisible, visible.
Off to RMCH today with AJ for blood tests with the Hematology team who have brought up a special testing machine from Great Ormond Street, will update later.
Local Company Donations
Today is a busy one, out visiting local companies again to obtain prize donations for AJ's charity night. School event to sort, bank account to open for the challenge, hotel rooms to negotiate, all go go go again!
So much has been happening over the last few days, we have had the pleasure of meeting some great people and local business owners who have offered to help & support Annabelle's Challenge with either donations, prizes, awareness raising even staff to help us! Brilliant. I am currently working on the 'prizes so far' list and will upload a list soon.
I have to admit this is hard work and we appreciate all the support we are being given, at the heart of all we do is of course Princess AJ which is only possible by keeping strong as a family unit.
Hospital visit for AJ's first Physio & Rheumatologist appointment
Our first visit to the physio and rheumatologist since AJ was diagnosed with EDS was very interesting. We were shown just how flexible Annabelle is!
Annabelle’s wrists have always clicked and I thought it was just one of those things, however it’s not. It is a sign that her joints are very subtle and could dislocate very easily. The physio advised we need to avoid all chances of dislocations because once it happens it will very easily happen again and again. Therefore we have been told not to handle Annabelle by her wrists such as helping her up off the floor – need to pick her up under her arms and don’t let her jump of furniture or other objects by holding her hands, no more swinging her whilst she is holding our hands walking.
School asked me to ask if Annabelle is ok to jump from a small height or just generally jump about in PE etc. The answer to this was No! This is when I am now starting to think, what is she going to be able to do?
Annabelle has always complained her knees hurt when she walks about 100 yards or more. At first we thought she was just being lazy and kept pushing her further. We have now been told this is part of the Hypermobility and to ensure she rests when she complains or to put her in her buggy. The physio told us her body will let her know when it’s time to rest and this will be on a regular basis. I didn’t realise but Annabelle has never really slept through the night fully from being a baby, this is quite normal for people with EDS as her body will probably ache and cause pains in her joints, which will make her restless.
The physio has shown us some exercises we need to carry out with Annabelle in order to try and increase her muscle tone. This needs to be done every night at home. We are also set to attend the hospital every 2 weeks for her to have 6 intense pyhsio sessions.
New website finalised for Annabelle's Challenge, final testing and content upload then go live over the weekend, already had 176 hits and not even launched yet!