Moray tot with Spinal Muscular Atrophy is a real superhero, says mum Jessica Goodwin
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THE family of a two-year-old boy diagnosed with an incurable condition one week before the first coronavirus lockdown have thanked family, friends and colleagues for their wonderful support.
For the first time in almost 18 months, James Goodwin's parents Jessica (32) and Carl (30) can look to the future with renewed hope of a more independent life for their gorgeous little boy.
James has Spinal Muscular Atrophy, which means he was born without a specific gene that produces the protein needed to allow his muscles to develop and work properly.
His mum said: "We didn't know anything about the condition until James was diagnosed at 10-months-old after he lost head control and stopped weight bearing. He doesnt't crawl and can't walk.
"He still struggles to lift his head off the floor. He has started to put more weight on his feet and we have a wheelchair for him which gives him a little more independence."
The family's world changed on March 16, 2020 - one week before the first national lockdown in the face of the Covid-19 pandemic - when the diagnosis of SMA was confirmed.
It turned their life upside down as there was no effective treatment for the incurable condition at that time and then they were thrust into a full lockdown along with the rest of the nation.
Slowly, but surely, the family - Jessica and Carl, who is in the armed forces at RAF Lossiemouth, have three other children Lauri (15), Lacey (8) and Jacob (3) - have adapted and with the terrific emotional and practical support from family, friends and work colleagues are planning a better life for James.
"He is getting treatment in Aberdeen which will be lifelong. He gets a lumbar puncture every four months for the rest of his life. That hopefully means the condition will not deteriorate as much," said Jessica, who is James' main carer.
Jessica works in Tesco in Elgin and staff there have taken him to their hearts and so far raised more than £700 to help the family pay for special adaptations to their home in Lhanbryde.
"We are trying to look to the future and be more positive about things. We have had so much support and are grateful for people helping us.
"We didn't think we would ever be in a situation like this but it has made us stronger for James."
James started attending the Ladybird Group in Lossiemouth last year, which supports youngsters with additional needs, and he loved it, and is looking forward to returning after the summer.
SMA was in the national news this week when it was revealed that a baby with the condition is to receive the world's most expensive drug aftre a campaign by his parents.
Eleven-month-old Edward, from Colchester, is to receive gene therapy Zolgensma, which normally costs £1.79 million, at Sheffield Children's Hospital, after NHS England gave the go-ahead for the treatment.