Amelia’s Helping Hands

For those of you who don’t already know, our daughter Amelia has Cerebral Palsy (CP). Due to the ongoing strain that cerebral palsy is having on her body, Amelia is due to have multi-level surgery in July 2014. This will involve lengthening her hamstrings and calves, and orthopaedic surgery to her feet.  Amelia will be in hospital for a few days and will wear below the knee casts for 6 weeks. This is a big operation for Amelia which will take approximately 6-12 months to recover from. During that time Amelia will require intensive rehab.

For anyone that has met Amelia, you will know what a very special little girl she is. Although she gets very frustrated by her disability, she is absolutely determined to not let it beat her. She has a dream that one day she will be able to walk unaided, and we, as her parents, want to ensure we give her every opportunity to try and achieve her dream.

Although the NHS provides some support and equipment, such as a wheelchair and frame, it is limited and doesn’t meet all of Amelia’s needs. To help Amelia try and achieve her dream, she will need access to therapies 2-3 times a week, which will include physiotherapy, osteopathy and hydrotherapy and some specialist equipment.  A ‘Freewheel off road wheelchair kit’ will enable Amelia to access the beach, woods and other ‘off road’ areas and activities that are currently inaccessible to her. This will help with her mental wellbeing and inclusion in activities with family and her peers.

 In order to fund all of this we will need to raise £28,000, as you can imagine this is a sum that we cannot possible achieve without help.

Thank you so much for taking the time to read this. We really appreciate every donation giving no matter what the amount. It all adds up and will make a huge difference to Amelia’s life.

Amelia has a ‘wish List’ of things that will help her achieve her goal. Here are a few of the items and their costs:

£25.00 will pay for half an hour’s osteopathy

£95.00 will pay for an hour’s physiotherapy or hydrotherapy

£160 will buy a slatted stool for physio & OT

£300 will buy a therapy bench for physio & OT

£575 will buy a Freewheel off road wheelchair kit

£3,900 will pay for a two week block of therapy at The Bobath Centre

If you would like to follow Amelia’s story as please have a look at our face book account - https://www.facebook.com/AmeliasHelpingHands

All funds raised will go to Tree of Hope, who will release money to us as and when we need it.  If we exceed the target amount, or the money is not needed for any reason, the funds will go to other sick or needy children.

Amelia’s story so far….

Amelia was born 9 weeks early by emergency caesarean due to life threatening complications. She was immediately taken away as she required urgent help with her breathing. This was a frightening time and emotionally traumatic for everyone.  Amelia then spent the next four weeks in the neonatal unit at East Surrey Hospital before she was finally well enough to come home.

Over the next few months we noticed that Amelia wasn’t reaching her milestones, including not being able to sit unaided at a year old. We were repeatedly told by professionals that it was expected delay due to her prematurity. Through perseverance we finally persuaded her paediatrician to refer her for a developmental assessment at 16 months old. Following this assessment the doctor agreed with our concerns and Amelia was referred for an MRI brain scan.

Nothing could prepare us for the huge shock we were about to receive from the results of Amelia’s scan. Amelia had extensive PVL which is a type of brain damage. We were advised that Amelia would have significant neuro developmental disability and that whilst it was too early to predict the final outcome of the disability, the MRI scan report was not very favourable in terms of prognosis. We knew at this point that life was about to significantly change for us all, but especially for Amelia, and the uphill battle was about to begin.

It was following the results of Amelia’s brain scan that our fears were finally confirmed when she was diagnosed with spastic diplegia cerebral palsy.

Amelia is now 9 year old and is unable to walk unaided due to her cerebral palsy. She uses a walking frame for short distances and a wheelchair for longer journeys or when she is tired or sore. Amelia attends a mainstream school, but she finds school and other activities very tiring due to the strain her disability has on her body and energy levels.

Amelia has a range of needs that are managed by a team of paediatricians, paediatric neurodisability specialists, physiotherapists, occupational therapists and orthopaedic surgeons who all work together to help Amelia. As you can guess, Amelia’s diary is rather busy!

Because of the strain that cerebral palsy has had on her body, Amelia is due to have multi-level surgery in July 2014. This will involve lengthening her hamstrings and calves, and orthopaedic surgery to her feet. Amelia will be in hospital for a short stay and will wear below the knee casts for 6 weeks. This is a big operation for Amelia which will take approximately 6-12 months to recover from. During that time Amelia will require intensive rehab.