Baby Ted Chadwick's Fight Against SMA Type 1

Hi. We are Dani and Louis. We are the proud parents of Ted, our adorable baby boy. In September of 2023, Ted was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, which for those unfamiliar with the disease, is a very rare genetic condition that affects the central nervous system -- one that is imperative for all life. Since he was diagnosed, our lives have been turned completely upside-down. Dani and I had to stop working to be with Ted full-time and to take on the costs of his medical care.

We’re here telling our story to so the wider community can get an understanding of this terrible disease and the burden it places on the family to cover huge costs not covered by any health service.

Living with SMA Type 1, is a rarity in that many, especially those diagnosed at Ted’s age, don’t live to see past the age of 2. The more we learn about the disease from doctors, from the web, and from other families dealing with SMA, the harder we find ourselves keeping the faith – but Ted encourages us every day as he battles and shows bravery to fight with all he has. With every smile and incredible feat of moving a limb or swivelling his neck on his own…we are filled with hope.

Any donation, however small, will greatly help our family in overcoming this huge hurdle. We have been covering the extra costs of Ted’s health care for the last 3 months and these are escalating with every new piece of equipment he needs or medication that is not available through the health system.

We are personally funding a drug called Risdiplam/Evrysdi that at market price is circa 10,000 Euro in Europe (yes – ten thousand euros) for one month’s supply. Obviously, this is not something we can sustain for long.

There is an option when he is older and stronger to take him to China as some other parents have done where a bottle of the drug is 600 USD for a month’s supply.

The economics and pricing on a child’s health and survival are not something we ever think we can get our head around.

All we want is to get back to a normal life as a family, a new normal with Ted being able to run, play, laugh, and experience life as a young boy. This “new normal” is a complete unknown due to the complexity of this disease and the fact that any successful treatments have not been available until very recently so there is still a lack of understanding of their effectiveness.

TED’S Story…

Ted was born in July 2023 and appeared to be a happy bouncing baby! When he was 6 weeks old, we noticed something off in his movements; noticeably his arms and legs weren’t moving as well as they had been, so we took him to his paediatrician. She confirmed our concerns, so we rushed Ted to the local hospital. There they ran tests and could not find a cause – no sign of viruses or infections – so he was transferred to the main children’s hospital for further analysis and testing. They suspected a neuromuscular disease of which we had no knowledge - we were beside ourselves.

A genetic test confirmed Ted’s condition and was diagnosed Spinal Muscular Atrophy Type 1 (2 backup copies). At first, we were not aware such a disease existed. It's so rare that it only affects 1 in 10,000 and there was no screening for this during the pregnancy, so we turned to the internet for more information. We discovered that most children were not expected to live past their second birthday. Our world collapsed. Our greatest fears as new parents realized, but we weren’t going to give up.

Through our own research, we found only a few treatments for Ted’s condition, at varying success rates. The most hopeful treatment, a drug called Zolgensma, came out during Covid and had begun to show some more prominent data in combating the faulty gene, but was still being tested and therefore not widely administered. Not to mention, it came at an incredibly high cost. In speaking with Ted’s doctors, our family and friends, this was Ted’s best option being the youngest patient ever to undergo this type of treatment in Bulgaria – a blessing for our hopes but a scary reality in parallel facing the factor of experimental medicine.

The next period of preparation, Ted was placed in the intensive care ward, intubated, and tested to see if he could even receive/survive the infusion. This took over 4 weeks. All the while, we could do nothing but be with Ted in his room, talk and sing to him, and hope the disease was not progressing quicker than we could keep up with. We had to take turns one by one as directed by the hospital to limit the number of contaminants entering the room.

Once the results came back, and he was officially eligible and scheduled to receive the infusion, he was transferred to isolation where Dani took over the nursing care. He was infused on the 13th of October, and he has been under the care of a full team of specialists who monitor his vital organs and breathing as the drug affects these adversely.

Within the first week, Ted showed signs of improvement. Our hearts lifted. Then, there were more setbacks. He regressed…but Ted has proven himself a fighter and is battling hard every day. We have seen him smile and hold his head up on his own (for a few seconds), he can take from a bottle, and we are so proud of him and what he’s accomplished thus far.

We have had to learn a regime of care that we never expected nor knew existed. We have had to understand complicated medications, different types of blood tests, the use of Bipap machines and ventilation, aspiration so his lungs don't fill with his own fluids and complex physiotherapy specific to his condition not to mention all the normal baby needs. We are providing round-the-clock care for him. This all has to be done whilst keeping him as isolated as possible as his immune system still is so low. We are limited to few visitors who we need to ensure are free from any viruses or infections.

We have to stay here in Bulgaria while he is under the care of the hospital. We had to leave our home, work, family, friends, literally everything behind to be by his side and to give him the best chance.

We have had a great team of doctors looking after him but due to the fact he is the youngest ever person to have undergone this treatment here in Bulgaria, there is a massive team effort from us all due to the rarity of the disease. We are blessed with an incredible family and group of friends who have supported us these last few months.

Ted will need extra medication not provided by insurance and regular physiotherapy to give him the best chance of making progress. Not to mention orthopaedic aids and equipment to help his development.

We are doing our best to get our family back on our feet in so many ways.

Many have asked what he needs. We know the help with all the additional things that are required to fight this disease are what Ted really needs now!

We have created an Instagram page where you can follow Ted's growth and progression.

@smasuperted

Many thanks from Louis, Dani and Ted