Help Rosa live her best life with SMA

We are fundraising for Rosa through Tree of Hope. As a registered charity, Tree of Hope helps us raise more funds for Rosa by claiming Gift Aid. Tree of Hope also manages Rosa’s fund, giving donors the reassurance that all money will be spent directly on Rosa's therapy and equipment.

Rosa’s story:

Rosa arrived in May 2024, a beautiful, contented baby, adored by her older brother and sister. For the first five months of her life we were blissfully unaware that anything was wrong, and were enjoying our busy lives with three children under five.

But by November Rosa was not reaching the normal milestones for a baby of her age; she wasn’t rolling over and she would fall to the side in her highchair. We voiced our concerns and were told to return to the GP if she wasn’t sitting up by the age of eight months. She wasn’t.

Once we finally got in front of a paediatrician, she examined Rosa and then sat us down to tell us that she suspected Type 1 SMA (Spinal Muscular Atrophy). She told us Rosa would never walk, and treatment was time-critical in order to save her life. In that moment, our world collapsed.

SMA is a genetic condition that causes progressive muscle weakness due to the loss of motor neurons. Historically, most babies with Type 1 did not reach the age of two. There is still no cure for SMA, but there are treatments that help slow the progression of the disease.

As we watched Rosa grow weaker and weaker, we frantically chased up a referral to Great Ormond Street Hospital to find out whether she could receive treatment. When Rosa was nine months old we were told, to our enormous relief, that she could have gene therapy on the NHS. Rosa has also since started on a clinical trial at Great Ormond Street Hospital to receive an additional treatment, a drug called Risdiplam.

Rosa is doing brilliantly. She is now a chatty, smiling 18-month-old who loves to sit and draw, roll around with her toys and laugh with her siblings. She is so determined, but her battle against the challenges of this condition is ongoing, and the NHS provides little aftercare.

To give Rosa a chance at learning to sit independently, stand, and perhaps (we hope) to even take a few steps one day, she needs extensive physiotherapy and hydrotherapy (weekly sessions + 2 intensives = ~£21,000 per year). She also needs specialist equipment such as a wheelchair to suit her age and size (~£4,000 each), and orthotics and a back brace fitted as she grows (total ~£8,000 every 5-6 months). We are also planning on making our home more accessible for her and hope to install a lift.

Any donations will be very gratefully received, and will help us to make sure that Rosa can live her best life.

Thank you for reading our story,

Rosa’s family

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