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, ensuring we maximise the funds for our beautiful little girl. Tree of Hope 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.

There followed an appointment with a paediatrician, who told us she suspected Type 1 SMA (Spinal Muscular Atrophy). 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. The following weeks, as we waited for the diagnosis to be confirmed and to find out if Rosa was eligible for treatment, were the worst of our lives.

There is no cure for SMA, but there are treatments that help stop the progression of the disease. When Rosa was 9.5 months old, we were finally told that Rosa could receive Zolgensma on the NHS. She has also just 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 minimal aftercare.

To give Rosa a chance at learning to 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.