Twins fight for life against Spinal Muscular Atrophy Type 1

Four years ago, we were told our twins wouldn’t live to see their second birthday. They have Spinal Muscular Atrophy Type 1, a progressive muscle wasting disease that affects every muscle in their bodies - from moving to eating and breathing.

We were told to take them home, treasure every cuddle, and make as many memories as we could.

No parent is ever prepared to hear those words.

Today, against every expectation, Raffy and Siddy are nearly five years old.

They’ve laughed, learned, started mainstream school, and continue to amaze everyone they meet with their courage and determination. Every single day they prove the doctors wrong.

But while modern medicine saved their lives, it is not a cure. Raffy and Siddy cannot crawl, stand or walk and cannot transition from laying down to sitting, relying on us for every transitional move. Our home prevents them from freely moving around in their wheelchairs and limits where they can go, and our home is no longer safe as we struggle to lift our boys.

Imagine being five years old and never have brushed your teeth at a bathroom sink because your wheelchair can't fit in your family bathroom.

Every morning begins with lifting two growing boys from their beds because they cannot get downstairs themselves. We dress them, administer their machines and meds, put in their orthotics and lift them into their feeding chairs for breakfast and then into their wheelchairs. Every night ends the same way. Every bath means physically lifting them in and out. Every trip outside means carrying two children and two wheelchairs down the external steps before we can even leave the house.

We know the day is coming when we simply won’t be able to do it anymore.

That day is getting closer than we’d ever imagined.

In just a few weeks, Raffy will undergo major spinal surgery. Post surgery, we wont be able to carry him and he’ll have to sleep downstairs in our living room during recovery because we won’t be able to get him to his own bedroom safely. Our fear is this may become a permanent solution.

No five-year-old should lose their bedroom because their home isn’t accessible.

No child should feel trapped inside the place that’s supposed to keep them safe.

We’re asking for your help to change that.

Raffy and Siddy have Spinal Muscular Atrophy Type 1 (SMA), the most severe form of this rare rapid muscle-wasting condition. At just 13 months old, they received life-saving gene therapy Zolgensma, which stopped the disease from progressing. However it is not a cure. We are incredibly lucky It saved their lives and will forever count our blessings, but it couldn’t restore the muscles they had already lost.

The boys cannot crawl, stand or walk independently. They rely on powered wheelchairs, airway clearance equipment, splints and braces, and they depend on us for every transfer.

Yet if you met them, you wouldn’t first notice their disability.

You’d notice two mischievous little boys who never stop smiling and laughing.

You’d see two brothers determined to “do hard things.”

You’d see courage, resilience and joy.

That’s why we’re fighting so hard to give them a home that allows them to live as independently and safely as possible.

To do that, we need to extend to build an accessible bedroom with a large enough training circle to accommodate two wheelchairs, an accessible wet room, install a through-floor lift, widen doorways, reinforce ceilings for future hoists and create step-free access so the boys can move around their own home safely in their wheelchairs and live with dignity.

We’ve already done everything we can.

We’ve released £60,000 from our home’s equity and secured a £30,000 Disabled Facilities Grant, but we’re still £100,000 short.

As a family now living on one income after Jenna (Mum) became the boys’ full-time carer, raising that amount alone is impossible.

How Your Donation Will Help

Every donation, no matter the size, brings Raffy and Siddy one step closer to the safe, accessible home they need.

But more importantly, your kindness helps give them something many of us take for granted: independence.

£20 could bring us closer to a a ceiling track hoist.

£50 could bring us closer to a through floor lift so Raffy and Siddy no longer need to be carried up and down the stairs.

£100 could help create a bathroom where they can bathe safely in comfort and with dignity.

£250 could help make it possible for Raffy and Siddy to leave their home independently in their powered wheelchairs.

£500 could help transform their house into a home where they can move around safely as they grow.

Every donation, whatever the amount, helps bring us closer to a future where our boys are not limited by the home they live in.

When you donate, you’re not simply contributing to building work.

You’re helping two little boys sleep in their own bedroom.

You’re helping them safely access every floor of their home.

You're helping them be typical brothers by giving them the choice to go upstairs and annoy their older sister in her bedroom.

You’re helping them gain independence, dignity and freedom.

You’re helping ease the physical strain and daily safety risks our family faces lifting two growing boys.

Most importantly, you’re helping two children who have already overcome so much continue living the life they have fought so hard for.

Our architectural plans have been submitted, and Raffy and Siddy are waiting for the day their home is adapted to give them the freedom and independence they so badly crave. We just need to raise the remaining funds to make their dream their reality.

No one ever anticipates having a disabled child — and no one can truly prepare for the costs that can come with it.

For our family, having disabled twins means these costs are not only doubled but they are astronomical. The equipment, therapies, adaptations and everyday essentials they need can quickly become completely out of reach for an ordinary family.

We never imagined we would be the family fundraising to make our home accessible. We never expected to have to ask for help simply to make our own home safe and accessible for our children.

Yet here we are.

Our boys deserve to grow up in a safe environment with the same opportunities, independence and dignity as every other child, but their disability is holding them back.

These home adaptions will mean the world to Raffy and Siddy. To be able to freely move around their home as they please is their dream. The adaptions will completely transform everyday life for them and for us. To know we are no longer putting our growing boys at risk carrying them up and down flights of stairs.

If you’re able to donate, thank you from the bottom of our hearts.

If you can’t donate, you can still make an incredible difference by sharing our appeal, organising a fundraiser, taking on a challenge, or nominating Raffy and Siddy as your workplace’s chosen cause.

Every share could reach the person who changes everything.

All funds raised are held securely by Tree of Hope, a registered children’s charity. Donations are eligible for Gift Aid where applicable, and all funds are safeguarded by the Tree of Hope charity and used solely for the charitable aims of Raffy and Siddy’s appeal.

Four years ago, we were told to make memories because our boys might not have much time.

Today, thanks to modern medicine—and the kindness of people like you—we’re dreaming of something we once thought impossible: watching Raffy and Siddy grow up in a home where they are safe, independent and free.

Please help us make that dream a reality.

Thank you for standing beside our warrior twins. 💙

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.