Welcome to our fundraising page for our son, Sebastian.

We have established this page to raise money in order to provide Sebastian with the care he needs and help him develop to his fullest potential despite having Spinal Muscular Atrophy Type 1.

Here is our story:

We are Dharmisha & Kuba. We met in 2010, got married in 2017, and in 2021, our amazing son was born. Everything was going well, and we were ticking things off the WonderWeeks app. However, there were always a few things missing: "You can roll from your back to your stomach...," "You shake a rattle..." But Sebastian just didn’t do those things. When the health visitors came to see us, they didn’t find anything alarming, saying we just needed to give him time.

But as Sebastian started to attend baby groups, we noticed something was different. Why were other babies moving more and hitting milestones each week while Sebastian was not? We tried not to compare, telling ourselves "he’s on his own timeline," but deep down, something didn’t seem right.

At his 13-week appointment, a health visitor noted that while Sebastian was still gaining weight, he had dropped two percentiles on the weight chart. This, along with his delayed milestones, led us to see a pediatrician for peace of mind.

Little did we know that this visit would begin our journey toward a life-changing diagnosis. The pediatrician had written "hypotonia – bright faces" on the referral letter to the neonatal specialist. After several appointments and tests, Sebastian was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.

SMA is caused by a missing gene (SMN1) responsible for producing a protein that allows us to move our muscles. Without this protein, muscles weaken and eventually waste away. Sebastian was born without any copies of SMN1.

On June 10, 2021, Sebastian was diagnosed with SMA Type 1, a condition with a life expectancy of only two years. Without treatment, Sebastian would gradually lose the ability to swallow, eat, breathe, and the little movement he had managed to gain. We were devastated; our world had crumbled, and we feared for his life. As parents, all we ever hoped for was the best for our son, and now all we hoped for was for Sebastian to survive.

Sebastian’s health continued to decline, and his muscles began deteriorating. He stopped moving his legs and was breathing into his belly. His exhaustion during feeding was a clear sign that SMA was progressing.

Fortunately, the NHS had just approved Zolgensma, a gene therapy that could change everything. This life-saving treatment was a one-off intravenous drip aimed at replacing the missing protein. But the drug, Zolgensma, is the most expensive in the world, and we weren’t sure if Sebastian would be eligible.

After numerous phone calls, emails, and tests, Sebastian was finally cleared to receive Zolgensma. On June 30, 2021, we listened as doctors explained the risks involved: liver failure, heart failure, and a long list of potential complications. Despite the uncertainty, this was Sebastian’s best chance for survival and mobility.

Sebastian received the treatment, and though his liver enzymes spiked, he was able to continue with the therapy. However, the work didn’t end there.

Now, Sebastian needs daily physiotherapy and hydrotherapy to maximize the benefits of Zolgensma. Without it, the therapy would not work as effectively. Sadly, NHS support for SMA is limited due to the rarity of the disease. Hydrotherapy pools have closed across the country, and we need to travel for access.

Additionally, the NHS has refused to fund Sebastian’s RSV immunization, a vaccine critical for his health. In 2021, we had to cover the cost of four doses (£5220) ourselves and will need to continue funding additional doses.

We have created this page to raise funds to help with these costs, including physiotherapy, hydrotherapy, specialized equipment, and necessary medical treatments.

How you can help:

Private physiotherapy and hydrotherapy

Specialized equipment, such as wheelchairs

Ongoing medical treatment and immunization costs

We are incredibly grateful to anyone who can support Sebastian’s journey. All the funds raised will be held by the charity Tree of Hope, and they will pay the hospital and physiotherapy centers directly. You can also add Gift Aid, which increases the donation by 25% at no extra cost to you.

Many thanks,

Dharmisha, Kuba & Sebastian

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 its core operating costs.

If we raise insufficient or surplus funds, the remaining funds will be used to support our child’s needs in accordance with Tree of Hope’s charitable objectives. If we cannot use the funds for Sebastian, they will be redirected to Tree of Hope’s general charitable purposes.