💜 Help Ella Take Her First Steps 💜

Our beautiful daughter Ella is 8 years old and has a rare genetic condition called Wolf–Hirschhorn Syndrome, caused by a partial deletion on her 4th chromosome.

This condition affects every part of her life. She has severe developmental delay, low muscle tone, epilepsy, pulmonary stenosis, and fused kidneys. Ella is immobile, non-verbal, and completely dependent on those around her for everything, including eating, drinking, moving, and communicating.

Despite all of this, she is full of light and laughter. Ella loves music and motion, especially car rides and rollercoasters. If she could tell us what she wanted, we know she would ask for the chance to move herself, to stand, dance, and explore the world in her own way.

Now, we are determined to help make that happen. ❤️

Why Ella Needs Surgery

Because of her low muscle tone, Ella finds movement incredibly difficult. To give some context, Ella could not sit up by herself until she was five years old, and it took years of hard work and physiotherapy to achieve that milestone.

That is where her independent movement journey currently ends. Ella cannot crawl, stand, or walk. Over time, because she does not use her body like we do, her muscles have become tighter - especially during Covid when she could not access her usual therapies.

As a result, her feet have started to contract inwards, and she cannot move them to a normal position because her leg muscles are so tight. We have tried treatments such as serial casting, but they have not worked. Botox injections were another option, but they would be painful and temporary.

Now, surgery is her only option.

Ella will have a bilateral Achilles triple cut and gastrocnemius recession, along with a third toe flexor tenotomy. In simple terms, her surgeons will lengthen the tendons and release tight muscles to allow her feet to rest flat on the ground again.

After surgery, Ella will be in casts for six to eight weeks, followed by AFOs (ankle–foot orthoses), special braces to support her feet and ankles while she learns to bear weight and, hopefully, take her first steps.

Recovery will take months of therapy, and walking independently could take years. The surgery is the first step towards her first steps, and there is a long journey ahead.

💜 How We Feel About the Surgery

We are so incredibly grateful that Ella will now have this surgery on the NHS.

It is absolutely essential that all aftercare and rehabilitation are in place before the surgery takes place, as without the right therapy, equipment, and support, the operation could be pointless or even harmful. We cannot let Ella go through such an intense procedure unless everything is ready to help her recover and reach her full potential.

At first, we were told the surgery could take two years, and going private would cost over £30,000, which felt impossible as we also needed another £40,000 to aid her recovery. Then we received a phone call: the surgeon could do Ella's surgery in January 2026. Suddenly, something that once felt out of reach became possible.

Getting the surgery through the NHS is a huge relief, but the recovery is not covered, which is why we need your support.

🌈 What We Are Raising Funds For

Surgery is only the first step. Recovery will take months of therapy, equipment, and dedicated support. Your donations will go directly towards helping Ella work towards walking.

Here is what the funds will be used for:

🧡 Physiotherapy:

Ella will need two sessions every week for at least two years.

Sessions range from £85 to £132.50, depending on location.

Therapy costs could total between £17,680 and £27,560 for two years.

💜 Specialist Equipment:

Standing frame, AFOs, therapy benches, adapted bike, new wheelchair, and an activity chair for home use.

These items come with a hefty price tag; for example, Ella’s adapted bike alone has been quoted at £2,511.

💙 Intensive Therapy Programme:

Once Ella has recovered from surgery, we hope to attend a specialist physiotherapy centre for daily therapy over two weeks.

Including accommodation, this programme is around £4,500 and would give Ella the best possible start towards independent movement.

💛 Support During Recovery:

Carers to help day and night while Ella is in casts and learning to use her AFOs.

💚 Rehabilitation Tools and Hospital Costs:

Travel and accommodation for hospital visits, and an iPad for speech therapy and entertainment during recovery.

We are both self-employed, which means we do not get sick pay, holiday pay, or any paid leave. Every day we take off to support Ella is unpaid and comes with extra costs. Your support allows us to be fully there for her without added financial strain.

This page will remain open and ongoing, as Ella’s journey does not end after surgery. She will always need therapy, care, and eventually a talking aid.

💖 Every Donation Counts

Whatever you can give, big or small, will help Ella take her first steps towards independence and freedom.

Thank you from the bottom of our hearts for helping our little thrill-seeker find her feet.

With love,

Ella’s Family 💜