At first, parents Louis Hadley and Lisa Money thought that their newborn son Tyler was super cute when he was sticking his tongue out to them. They realized later on that what Tyler was doing was actually a sign of a rare and deadly disease. Tyler, who’s now nine months old, was diagnosed with spinal muscular atrophy type one, The Sun reports.
According to doctors, little Tyler may not make it through his second birthday. The parents immediately took the baby to the hospital when he was only five months old after he apparently choked on Calpol.
Tyler’s disease, according to The Sun, “is the most severe of a rare neuromuscular condition and makes his muscles extremely weak, causing him difficulty sitting up, moving and swallowing.”
The family, who lives in Portsmouth, Hampshire, is now trying to get a hold of a new drug at Hopital Bicetre in Paris, France that could aid in prolonging little Tyler’s life.
Louise, 28 years old, said, “We don’t know whether this treatment is going to help him, but we are willing to try anything. It was just heartbreaking to get the diagnosis and to see him in and out of hospital, but the fact there is something out there that might help him has given us some hope.”
Lisa, 28 years old, gave birth to Tyler on June 24 through a caesarian section. At first, the baby wasn’t breathing, but the doctors succeeded in resuscitating him.
Louis said, “His tongue was just sort of flickering and we thought it was quite cute. We didn’t imagine there was something wrong. It wasn’t until months later that we heard it is one of the symptoms of his condition.
“We had friends who had babies around the same time and they were doing things like moving about, or trying to roll over, but Tyler wasn’t doing anything like that.”
The family was able to raise more than 3,000 UK pounds in funds that made it possible for them to travel to France on March 29th and administer to Tyler his first treatment, which is an injection in the spine.
Louis said, “We don’t know exactly how much all of this will cost, as Tyler will need injections every four months. We have set the target at £50,000, as we want to give him as much of a chance as possible. We are so grateful for everyone who has donated so far.”
