Eden Taylor Lifetime Mobility& Rehabilitation Fund

Eden was born on February 23rd 2013, As soon as Eden arrived I knew that something wasnt right, she was very floppy and low toned, she never touched her face and never gained head control over the first 6 weeks. At that time I started to google and knew my daughter had hypotonia( floppy baby). I was driving myself mad with worry. At 8 weeks old we were seen in hospital and that's when our lives changed forever. On July 2nd 2013 we were finally given a diagnosis of Merosin deficient congenital muscular dystrophy. 

In 2015 we experienced a terrible year with two long admissions in intensive care which were very serious at the time due to chest infections and respiratory failure, due to edens weakness and inability to cough effectively.

we had four amazing years admission free from hospital and then came another awful stroke of luck for Eden.

On feb 11th 2019 she was rushed into hospital with a sickness bug and possible aspiration in her lungs... within 24 hours Eden had sepsis and her body went into septic shock.  I knew this was a scary thing but had no idea how serious this was going to be. Eden spent 102 days in intensive care and had to battle multiple organ failure, her liver, her kidneys, her heart was all being tested and in feb 13th we were told she wouldn’t make it.

Eden did make it against all odds and every day was a massive battle for her, as a result she had to have both her legs amputated below the knee, and has lost all the little strength she once had. She struggled with seizures, we didn’t know if she had brain damage, and her feeding changed hugely. 

Were home now, Eden is amazing, she’s lost her legs but not her spirit and her brain is fully in tact. Eden has lost the strength of her hands which is huge for her as she can no longer play as she did, this is all due to muscle wastage, the sepsis and how poorly she has been.

Due to edens muscular dystrophy  she will also never crawl, walk or roll over and will always need an adult to take care of her needs. Despite this she is incredibly bright, bossy and does not stop talking.

Our home is now adapted but this may need to be modified as she grows.

this fund has been set up to ensure that whatever life has left in store for Eden she can live it to the full, she will need a new power chair in the next 4 years, these are easily 15k, she will need further adaptions to her seating, car seats and other equipment at home as she grows and with the added complication of her amputations. 

She needs Rehabilitation physio which we may need to peruse privately to get her the hours needed, we so want her to get back the use of her hands, it would mean the world to her and us.
She needs to have access to ongoing hydrotherapy at home.  She also will need help with cosmetic, lightweight prosthetic limbs, so she can wear pretty shoes again. 

I'm not very good at asking for help but I've had to be brave and do this for Eden.  We have also had some amazing people already do some events for Eden so it’s only fair we do this for her. 

Any penny you can spare will be so appreciated and make our little girls life as happy as possible for as long as possible. 

We we don’t know how much all this will cost us but we know it’s outside of what we can afford for Eden in the time she will need it. 

Thank you so much