Our daughter, Amelia, has Spinal Muscular Atrophy (SMA) and it breaks our hearts to see her crying and not being able to help. We feel powerless. We've been trying our best to support Amelia's needs ourselves but we have to face the truth, we need your help.

Imagine being able to think and feel, just like others. Completely conscious and aware of everyone around you.

Yet you are unable to speak.

Unable to move. Unable to eat or drink. Sometimes, even breathing is difficult for you.

It’s like you are a prisoner in your own body.

Unfortunately, this is real life for our daughter Amelia, aged 5, born with Stage 1 (the most severe type) Spinal Muscu

lar Atrophy (SMA), a genetic condition that weakens her muscles.

We were devastated when just 5 months after Amelia's birth we were told she wouldn't live until her 2nd birthday. We didn't give up on her though and we decided to fight for her life. We've found out about a new experimental drug that is now helping her to survive each day.

Surviving is not enough though. We want our daughter to have a chance to live the best life she can in her condition. To communicate with us and move around.

Supporting Amelia with her rehabilitation, speech therapy and a living environment that suits her condition – with an adapted bathroom and various pieces of medical equipment on hand – all come at a cost.

We are now raising funds to help Amelia to live the life she deserves.

As her parents, we are asking for your support.

We are not big earners, with only my husband working while I tend to Amelia’s needs 24 hours each day. We also have two sons ages 15 and 7. We are grateful for our Carer’s Allowance, and yet £67.60 per week is insufficient to support her many needs.

Through our fundraiser, we hope your kindness and generosity will help raise a total of £25,000 towards caring for Amelia.

How will the funds raised be spent?

Amelia has outgrown her wheelchair.

Children never stop growing, and Amelia is no different. She has outgrown her wheelchair that we bought second hand with a previous fundraiser and is in desperate need of a replacement which costs £2150.

Unfortunately, the NHS does not provide the type of wheelchair Amelia needs - one with wheels, allowing her to build the strength in her hand muscles and give her a little bit of happiness from moving around the house independently.

The NHS can provide her with a special buggy but, due to Covid, she has been waiting for over a year to receive one. The old one is also too small for her.

We also need help to fund her rehabilitation costs.

Amelia requires a qualified physiotherapist to help strengthen her muscles. As her carer, I was shown a few exercises to do with her but I'm not qualified enough. Sometimes I feel I can't provide her with quality rehabilitation because I'm too tired. I need to move Amelia around the house in my arms and also in and out of the bath which is a big physical strain. During the night when she wakes and needs support with:

• turning and moving her to help slow down her worsening scoliosis

• sucking saliva from her mouth to prevent choking

• checking her breathing machine (BIPAP) is working and appropriately fitted onto Amelia’s nose

We are constantly tired from sleep deprivation which limits our support capability during the following day. But the crux is, we should not have to rehabilitate our daughter.

One hour with a private physiotherapist is £80 per hour. Amelia needs a minimum of 2-3 hours of physiotherapy each week, which equates to an annual cost of between £8320 and £12480. She would also benefit from a specialized medical system for rehabilitation called PRAGMA, which costs a further £8000.

Amelia requires speech therapy.

Just some basic speech therapy and Amelia could communicate her basic needs – tell me why she is crying so I could console her better or maybe one day I could even hear her say ‘I love you’.

Speech therapy costs £60 per hour. This equates to an annual cost of £6240 - yet another essential to Amelia that we cannot afford.

That’s before we consider special equipment costing £10,000 which could help Amelia to communicate much quicker by blinking her eyelids.

With your kindness, we know we can reach our financial target of £25,000.

Thank you for your donation.

Our stretch target is an additional £10,000 in funding.

It would help Amelia and our family benefit from having an adapted bathroom.

We live in a rented 3-bedroomed house where non of the bathrooms are adapted for Amelia's disability. One of our bedrooms is full of medical equipment, so Amelia and I sleep in the dining area (Amelia in her cot and I on the sofa bed).

We have been on a council waiting list for a larger 4-bedroomed home for over four years. We suspect it takes so long because the council waits on a house becoming available with a bathroom pre-adapted for someone with a disability, and those are probably rarely available.

With an additional £10,000, we will be able to secure a 4-bedroomed home sooner and cover the cost of adapting the bathroom, so we can tend to Amelia basic needs like bathing her, without having to lift her in and out of the bath ourselves as she gets heavier. While also giving us the space we require to provide Amelia with her own room to sleep and house her medical equipment.

Any help will be greatly appreciated.

Thank you