Gemma Down
Stepping With Sophie...in her wish to walk
Fundraising for Tree of Hope
Story
UPDATE - Please scroll down for a back-story of our journey, but to give everyone an update on where I am today... My name is Sophie Joy and I am now 9 years old - Back in 2014, on the 12th September, at Bristol Children's Hospital, I had the 'SDR' surgery that we had all been raising money for, with thanks to the amazing Dr Edwards! - Unfortunately, as suspected, this wasn't NHS funded and so the crucial funds that we raised (with your amazing help and support!) were put towards my surgery, before and after care and equipment needed to help me to reach my goal - a dream of being able to walk unaided! Back in 2012, when we first started fundraising, this is what we said...
"I love the little bit of independence that walking with my frame brings, but the one thing I long to do however is play in the park properly with my twin sister Heidi, my big sister Lily and my baby brother Barrett! This is why my Mummy and my Daddy have set up this page, to get me the key to the brighter future I deserve! That key is an operation called Selective Dorsal Rhizotomy (SDR), which I am very fortunate Mummy came across and researched tirelessly for me...this operation would mean the Dr’s could take the tightness in my muscles away and without that horrid tightness which restricts me from doing so many things I want to be doing, I could hopefully learn to walk independently and maybe one day be running in the park with my brother and sisters!"
I am so so delighted to say, that again, thanks to your help and support, and lots and lots of hard work and determination on my part, I now love to run around the park with my sisters Lily and Heidi and my brothers Barrett, and Quinten who has since joined us! I love the new lease of life my surgery has given me and the growing independence I now have! I still continue to work hard with my physio, and love to keep active with swimming and horse riding, so that maybe one day I could say goodbye to my wheelchair for good!
Note from Mummy and Daddy - We continue to use the avaliable funds in helping Sophie to reach her fullest potential... This has mainly been used to date, in allowing Sophie intensive physio sessions, which have been vital in seeing her where she is today. They have also helped in funding equipment such as a wheelchair, adapted bike and lycra suit.
Other ways in which we can foresee these funds being used, are for Sophie's continued strengthening and the possibility to provide a space for this continued physio as Sophie gets bigger. Sophie struggles to get up the hill to her school in her wheelchair, which means I have to push her, she (as you can imagine!) gets frustrated at this lack of independence, and so we'd love to be able to purchase a motor of some kind for her wheelchair, to allow her the independence she thrives to get herself up the hill to school. One thing we'd all love as a family, and proves very difficult for us, is to be able to go out on family bike rides! - something so simple for most families I'm sure, but for us it'd mean finding something for Sophie's age and ability that could attach to the back of one of our bikes - This year, we'd love to find that something, and venture out together as a family on our bikes. We are also in need of a motability car, which would allow us to travel together as a family, with the added necessities of Sophie's wheelchair and other equipment. However because of the size vehicle we need for our family and Sophie's wheelchair/equipment combined, these all unfortunately come with a down-payment, so these funds would go some way towards allowing us the independence as a family, that a car can provide.
We continue to thank you for your ongoing support in helping us see Sophie reach her fullest potential. For us to watch her going from strength to strength, and to see the smile on her face as she lives her dream, really is immeasurable! Thank You! X
Thanks for taking the time to visit my JustGiving page that my Mummy and Daddy have taken the time to organise and set up with The Tree of Hope Children's Charity, to hopefully make my wish to walk come true! So come and step with me on my journey...
The back-story
My name is Sophie Joy, I am almost 3 years old and I have Spastic Diplegia Cerebral Palsy (although as we like to say 'I may have Cerebral Palsy, but Cerebral Palsy doesn't have me!') I was born on the 6th December 2009 with my identical twin sister...although I haven't been able to come first with most things due to my disability, I can always say I was the first to enter the world, a whole minute before my sister!! We were born 8 weeks early after Mummy went into premature labour; we weighed just 4lb 2oz and 4lb 3oz and the first month of our life we spent in the Neonatal Unit at our local hospital, where we also stayed for Christmas!...luckily Father Christmas knew we were there! :-) The first few months of life at home after NNU were great, we were both doing really well for being born prematurely...feeding well, sleeping well, crying well! It wasn't until my twin started to do things a lot sooner than me that my family noticed I was a little delayed with my mobility, however this at the time was just put down to developmental delay due to being born prematurely! Ironically for us however, Nana has been a teacher for children with CP for years so was able to see the signs of CP in me and my Mummy and Daddy finally pushed for a diagnoses to get me the support I needed! To date, I have had just over a year of physiotherapy to help not only with the tight muscles (spasticity) in my legs, but to install the correct messages to the part of my brain which doesn't work properly...the part that isn't telling my legs to do what they should be doing and climb, walk and run like other children my age do all of the time! My Mummy and Daddy have to work hard to keep my physio up at home and I have had to work tremendously hard just to do simple things such as crawl, kneel up and climb small obstacles. Although I have come on remarkably really, from only being able to commando crawl when I first started physio at around 1 1/2 years old to now at 2 3/4 years being able to walk using my Kaye Walker (albeit with the difficulties with come with spasticity of the legs of course) and my family are all extremely proud of the things I have achieved...I still have a long way to go and physiotherapy will be on going for the rest of my life to 'manage' my CP...It will never cure it! Despite this, I am a happy little girl and my family say I always have a smile on my face!...I love to play with my friends at nursery, being creative, looking at books, getting messy, being outdoors, everything else any other nearly 3 year old loves to do! I love the little bit of independence that walking with my frame brings, but the one thing I long to do however is play in the park properly with my twin sister Heidi, my big sister Lily and my baby brother Barrett! This is why my Mummy and my Daddy have set up this page, to get me the key to the brighter future I deserve! That key is an operation called Selective Dorsal Rhizotomy (SDR), which I am very fortunate Mummy came across and researched tirelessly for me...this operation would mean the Dr’s could take the tightness in my muscles away and without that horrid tightness which restricts me from doing so many things I want to be doing, I could hopefully learn to walk independently and maybe one day be running in the park with my brother and sisters!
This operation costs lots with the aftercare which is involved too and is unfortunately not widely funded or even carried out over here in the UK...we are going down the NHS path first however, which with any luck we will get a yes to both the operation and the funding; but this is sadly more unlikely than is, going on statistics and a lot of families are embarking on a journey to America to a hospital called St Louis Children’s Hospital to pursue this operation, which comes at an expense. We have therefore come to the decision to start fundraising now, as even if we were very fortunate not to need funding for this operation, the aftercare that Sophie will need will still come at an expense and to start fundraising after possibly getting a no will obviously mean that Sophie will have to wait longer for an operation that could benefit her better the earlier it’s done!
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity. Any funds we were fortunate enough to raise which Sophie didn’t need if we were very lucky, The Tree of Hope Children’s Charity would keep and donate to another child in a similar situation... So please help us on our journey and step with Sophie in her wish to walk. Thank you x
For more information and to 'like' and follow our journey on Facebook, click on the links below (UPDATE - please note that our Facebook Page is where you can keep the most up to date with Sophie's journey)...