PLEASE REMEMBER TO TICK THE GIFT AID BOX IF YOU DONATE. THANK YOU.

We are continuing our fundraising for Sidney through the charity Tree of Hope. As a registered charity, Tree of Hope helps us raise more funds for Sid by claiming Gift Aid, and businesses can also donate. This approach ensures we maximize the funds raised for our boy. Tree of Hope manages Sid’s fund, giving donors the reassurance that all money raised is being spent directly on Sidney and his needs.

This is our story:

Our beautiful boy, Sidney, has been diagnosed with type 1 SMA (Spinal Muscular Atrophy). SMA is a genetic neuromuscular condition that causes muscle weakness and wasting due to the loss of motor neurons. It is a degenerative disease that, if untreated, is fatal. Historically, most babies with type 1 SMA do not reach the age of 2.

At around 4 months old, we realized something wasn’t quite right with Sid. He wasn’t reaching milestones as expected. He was breathing with his belly, unable to support his head, stopped kicking his legs, and the movement in his arms was worsening instead of improving. He began struggling with feeding and showing signs of respiratory distress. He was completely floppy.

After countless trips to the doctor, no one could tell us what was wrong. Frustrated by waiting for a pediatrician referral, I started researching obsessively. Eventually, I pieced together the symptoms myself, and my heart sank. I realized that our beautiful boy had all the signs of SMA.

I sat Aden down on the bed after his night shift and told him my fears. Saying the words aloud was heartbreaking, but I knew I was right. The NHS website confirmed my worst nightmare: “life expectancy less than 2 years of age.”

I went into fight-or-flight mode. We rushed Sid to our local hospital and pleaded for help, knowing how quickly this awful disease could claim his life. Every day left untreated mattered.

A week after we brought him to the hospital, blood tests confirmed the diagnosis. Our world was turned upside down.

There is currently no cure for SMA, but there are now three drugs available that help stop the progression of the disease. Sidney has been fortunate enough to receive one of them, Zolgensma, on the NHS and is now participating in a clinical trial for Spinraza in Barcelona. Thankfully, he is doing well and continues to surprise us with his strength and determination. However, his battle is ongoing, and sadly, the NHS provides very little aftercare.

It falls on parents like us to research, trial new therapies, and fund them, along with the equipment Sidney needs to thrive. The damage SMA has already done to his body requires ongoing support, therapies, and equipment to ensure he has the best quality of life possible.

We are so grateful for your generosity, which helps us provide Sidney with the tools, treatments, and therapies he needs. Every donation makes a difference.

Thank you so much for supporting Sidney’s journey.

With love,

Sidney’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, 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.