Hydrotherapy pool for Amelia
Donation protected
Thank you for reading our story. We are fundraising for an outdoor hydro-spa for our daughter Amelia Grace (age 15).
Amelia was born with a rare genetic conditions called Mowat-Wilson Syndrome https://mowat-wilson.org/
Amelia has global developmental delay, epilepsy and severe constipation. She has always been a happy and content little girl with a smile for everyone she meets. She is non verbal, incontinent and needs constant care. She has limited mobility and needs aid when walking but she will take steps with a walking frame and will walk around the home with support. This has taken years and years to achieve by building up her confidence slowly.
It came to light a couple of years ago that Amelia's foot deformities were worsening and the only real solution was to attempt surgery to lengthen her ham strings. This would also help with posture as she has scoliosis. She would eventually be unable to walk if we left it. Keeping the little bit of independence she had was very important to us all so we decided to go ahead to give her a better quality of life.
The surgery went ahead on the 30th September 2019. Three days later we were back home, with a very upset and anxious daughter. She was in a huge amount of pain and was hard to deal with as Amelia had never been this way. We knew it would be hard for her but no idea it would be to this extent.
For the next 8 weeks we were stuck home with very little help or advice from the professionals as to how to manage her. We had been left completely isolated, with no way of getting Amelia back to school with full leg casts on, no care plan in place for physiotherapy, having to carry Amelia around the home because she couldn't sit in a chair. It was a hugely stressful time and was only a matter of time before we broke down in front of people on more than one occasion. We were asking for help and it felt like nobody would listen.
Almost 4 months later and because of lack of aftercare/physio her ham strings retracted to the extent that we now cannot straighten her legs at all. We were told that another procedure was required to help her with her pain (Botox) and she would be put in casts again. On the 5th February she was again put to sleep and given her injections. But we were given the bad news that the procedure didn't work, her legs were basically stuck in a bent position so we're unable to cast her legs.
Our consultant told us that she will need regular physio for the next couple of months to see if they can do anything to help her legs and if not she will need more surgery in around 4 months time to lengthen her ham strings AGAIN. This really isn't something we want for her. It would be devastating to put her through it all over again. She struggled with her breathing in recovery and had a tooth knocked out. It was the longest day we have ever experienced.
So this is where the Gofundme comes in. We need to get Amelia as much physio as we can in the next few months. Amelia has loved her hydro sessions in school but they can only commit to 1 per week at most. If we had the means to give her some hydro at home we could do this daily and plenty more at the weekend.
I could apply to different charities for this but it's not guaranteed and it would take a lot longer than raising funds this way. Time is precious and I have to try everything for her and help her right now.
Our physio has said that this would be of benefit to her. It would help to get her muscles working as they have wasted away.
**We are raising money for a spa, cover, filters, and a canopy to protect her from the elements and keep some warmth in and also a patio heater.
Thank you for reading our story.
Adele, Simon & family
xxx
Amelia was born with a rare genetic conditions called Mowat-Wilson Syndrome https://mowat-wilson.org/
Amelia has global developmental delay, epilepsy and severe constipation. She has always been a happy and content little girl with a smile for everyone she meets. She is non verbal, incontinent and needs constant care. She has limited mobility and needs aid when walking but she will take steps with a walking frame and will walk around the home with support. This has taken years and years to achieve by building up her confidence slowly.
It came to light a couple of years ago that Amelia's foot deformities were worsening and the only real solution was to attempt surgery to lengthen her ham strings. This would also help with posture as she has scoliosis. She would eventually be unable to walk if we left it. Keeping the little bit of independence she had was very important to us all so we decided to go ahead to give her a better quality of life.
The surgery went ahead on the 30th September 2019. Three days later we were back home, with a very upset and anxious daughter. She was in a huge amount of pain and was hard to deal with as Amelia had never been this way. We knew it would be hard for her but no idea it would be to this extent.
For the next 8 weeks we were stuck home with very little help or advice from the professionals as to how to manage her. We had been left completely isolated, with no way of getting Amelia back to school with full leg casts on, no care plan in place for physiotherapy, having to carry Amelia around the home because she couldn't sit in a chair. It was a hugely stressful time and was only a matter of time before we broke down in front of people on more than one occasion. We were asking for help and it felt like nobody would listen.
Almost 4 months later and because of lack of aftercare/physio her ham strings retracted to the extent that we now cannot straighten her legs at all. We were told that another procedure was required to help her with her pain (Botox) and she would be put in casts again. On the 5th February she was again put to sleep and given her injections. But we were given the bad news that the procedure didn't work, her legs were basically stuck in a bent position so we're unable to cast her legs.
Our consultant told us that she will need regular physio for the next couple of months to see if they can do anything to help her legs and if not she will need more surgery in around 4 months time to lengthen her ham strings AGAIN. This really isn't something we want for her. It would be devastating to put her through it all over again. She struggled with her breathing in recovery and had a tooth knocked out. It was the longest day we have ever experienced.
So this is where the Gofundme comes in. We need to get Amelia as much physio as we can in the next few months. Amelia has loved her hydro sessions in school but they can only commit to 1 per week at most. If we had the means to give her some hydro at home we could do this daily and plenty more at the weekend.
I could apply to different charities for this but it's not guaranteed and it would take a lot longer than raising funds this way. Time is precious and I have to try everything for her and help her right now.
Our physio has said that this would be of benefit to her. It would help to get her muscles working as they have wasted away.
**We are raising money for a spa, cover, filters, and a canopy to protect her from the elements and keep some warmth in and also a patio heater.
Thank you for reading our story.
Adele, Simon & family
xxx
Organizer
Adele Sullivan
Organizer
