When this mum’s baby kept ‘flickering’ his tongue, she initially thought it was an adorable little habit he had picked up along the way. Little did she know that baby Tyler’s tongue flicker was actually a tell-tale symptom he was suffering from a rare and fatal disease.
Tyler Hadley was born with Spinal Muscular Atrophy Type 1 – which causes his muscles to become weak and also causes problems with swallowing.
The tot’s mum, Lisa Money, tells The Healthy Mummy that at first she was none-the-wiser and thought the tongue flickering was just a cute habit of Tyler’s.
“When his tongue started to flicker we did find it so cute and funny not realising it could be to do with a disease,” she tells us.
Tyler would often flicker his tongue. Tyler also failed to meet major baby milestones, including sitting up and rolling over. Not thinking much about the tongue flicker, Lisa thought perhaps her baby was just taking a little bit longer to develop compared to other children.
“When Tyler was five months old, we’d given him some baby pain-relief medicine, as we suspected he was having teething pain; but he actually was beginning to choke,” says Lisa.
Lisa and her partner Louis Hadley – who are based in the U.K. – rushed their baby to hospital, and that’s when doctors realised that something was not quite right with Tyler.
Doctors noticed how floppy Tyler’s body was and realised he was struggling to swallow, that’s when they suspected he was suffering from Spinal Muscular Atrophy Type 1 (SMA Type 1).
SMA Type 1 is usually diagnosed within the first six months of life, and sadly it is one of the most severe forms of Spinal Muscular atrophies that comes with a high mortality rate.
Children with SMA appear normal at birth before the deterioration and loss of movement in their limbs is noticed, says Spinal Muscular Atrophy.
Most cases of SMA are caused by the deficiency of a motor neurone protein called SMN. SMN can also directly affect muscle cells.
According to Better Health, one in 6,000 babies born in the world are born with a type of SMA, type 1 being the most and type 4 being the least severe. It’s also believed that one in 40 people are genetic carriers.
Tragically, there is no cure for the rare disorder, but there is a ray of hope, as a new drug called Spinraza may be able to stop the deterioration of the disease.
“When we got told that he could have SMA, we just broke down in tears; and when the doctor told us that he has SMA Type 1 it was as if the world had stopped and it all came crushing down,” says Lisa.
“That was the worst day of our life and knowing we haven’t got long, as we got told that most babies don’t make it to their 2nd birthday.”
There are currently places in France and in Europe where the Spinraza injections are available, and the family have started a GoFund me page to help raise the money Tyler will need for injections every four months.
“We just want to give Tyler the best life we can, although we know he is going to have disabilities and problems,” adds Lisa. “We’ve heard from other parents that this drug can help stop the progression of SMA. And children who have these injections can live longer.”
So far, the family have raised nearly $4,000 for Tyler.
Tyler has already been over to Paris for two injections. However, he still needs to see a consultant, physiotherapist and have his third injection.
“Tyler is doing well showing little signs of improvement, he still can’t sit up yet but he is really trying to,” says Lisa.
“He can now lift up his head for a few minutes, which he could never do, and he is moving his arms and legs a bit more now than before. We’re just remaining positive and hoping we can give our baby as normal and full of a life as we can give him.”
Poor little Tyler. We really hope the family are able to raise the funds for their little boy. Our hearts go out to you Lisa and Louis. We have no doubt your positivity and determination will help Tyler get the best treatment he can while he fights this disease.
For more information on SMA Type 1, click here.
For more Healthy Mummy articles relating to children’s click here.