“WE never knew how much love and happiness shines in the eyes of a child who is fighting this disease. He brings out the best in us, a little boy whose face just lights up with so much happiness every day.”
Tamryn and Llen Nell of Greenshields Park have had to watch their little boy, Liam, fight the effects of spinal muscular atrophy (SMA) type 1 since shortly after he was born.
The four-year-old has never been able to sit unsupported, crawl, stand or walk and he needs constant care and monitoring.
SMA is caused by a missing or defective gene called survival motor neuron 1.
The gene is meant to produce SMN protein, which is necessary for the survival of nerve cells in the spinal cord, called motor neurons.
When the cells don’t get enough protein, they shrink and eventually die and the ability of the brain to control the muscles diminishes. There is currently no cure for SMA.
Liam was born on September 13, 2013, a healthy, kicking baby boy. However, about 14 weeks later, his parents noticed there was less movement in his legs.
A paediatrician discovered Liam had low muscle tone, but a scan ruled out a possible tethered cord and spinal abnormalities. He was then sent to a physiotherapist where he underwent physiotherapy and occupational therapy for two months to try to build his muscles with no real improvement.
At six months, Liam was sent to the Red Cross Children’s Hospital in Cape Town where he was diagnosed with SMA Type 1, the most severe form of the disease, on March 28, 2014.
“Something no parent ever wants to hear is that their child has a terminal disease and they might not live to see their second birthday. We looked at each other, holding Liam with tears running down our faces; we could never express how we felt that day,” Tamryn and Llen said.
“While they were explaining SMA, everything was just an echo after hearing the terrible news.”
Less than a month later, Liam contracted a common viral infection that, because of SMA, led to pneumonia. In July that same year, he got pneumonia again.
Shortly before his first birthday, he crashed and had to be resuscitated.
“Being the fighter he is, the tubes were removed within two days.”
Liam spent his first birthday in the hospital. During 2015 and 2016 he spent quite a bit of time in the hospital before the Nells were referred back to a specialist in Cape Town.
Liam was put on a new formula, feeding schedule and medication and since then he has not been back in hospital and experienced no new complications.
According to his parents, he enjoys being outside, listening to music, being in the swimming pool and loves animals
Due to the severity of his condition and the level of care he requires, Tamryn stopped working to take care of Liam, making Llen the family’s sole breadwinner.
“This was a difficult choice to make as the medical expenses continue to increase as Liam gets older and his needs change. The new formula has really made a huge improvement. Unfortunately, it is very costly and has put huge financial pressure on us.”
The formula alone cost nearly R8 000 per month. This excludes all Liam’s chronic medication and day-to-day expenses.
“It has been a tough road, yet so rewarding. With us standing together and all the prayers and support, we will fight this disease.”
Follow Liam’s amazing journey on the Liam’s Journey – Spinal Muscular Atrophy Type 1 Facebook page.
