A mum has shared her heartbreak after finding out that both of her children are unlikely to live over 10-years-old.
Medics expect Theo and Oscar to live short lives but their parents are determined to ensure that they will be full of smiles.
Courtney Webber realized something wasn’t quite right when her son Oscar was born and had tremors in both his eyes and head.
After a series of tests, the now three-year-old was diagnosed with Pelizaeus-Merzbacher Disease (PMD), according to Staffordshire Live.
Courtney was pregnant with Theo at the time and invasive testing revealed that her youngest child also had the condition.
The mum was given the option to terminate the pregnancy but decided against it and is hoping to give the boys the best life possible.
Pelizaeus-Merzbacher Disease is a rare life-limiting brain condition, affecting only one in 900,000 children in the UK.
It causes progressive deterioration and the boys have been given a prognosis of around 10 years.
Courtney said: “Oscar has the biggest smile in the world – he just lights up the room.
“He’s created the most beautiful bond with my nine-month-old. We’re watching them grow and flourish together.
“It’s an awful situation we’re in, but we’re making the best of it.
“I’ve always said there are two roads that you can go down – the dark and dingy road or making the best of the situation.
“It’s how you deal with it – and I always go down the positive path. It’s how I am with everything.
“You could be anxious and stressed all the time, but we do what we can to give them the best quality of life so they can enjoy their childhood.
“People say I’m strong, but I don’t know where I get it from – I guess having children gave me that instinct.”
“We live with this situation and have never had an able child, so we’ve not experienced that.
“What we know is how to care for children with disabilities.
“It’s about having the right mindset and attitude. It can feel isolating as we are different to everyone else.
“We can go to a child’s party and they’ll be the only disabled children there.
“People will look and watch, which they wouldn’t do to any other child.
“It can be a very isolating feeling so we want to raise awareness of this condition.
“The boys also have a very special bond with their nanny, Maura Rivers, and she’s always there with help and support.”
Courtney and husband Stuart, 31, of Burnthill Lane, Rugeley, had been trying for a baby for three years when they found out they were expecting Oscar not long after getting married.
A test at 12 weeks found they were on the cusp of being a high-risk pregnancy, but it was not until Oscar was born the tremors were noticed.
It was not thought to be anything significant at first, with many doctors telling the couple the same thing, but then they got a call from Birmingham’s Children’s Hospital after a genetic test – and Oscar was found to have the rare condition. It comes from the “X-linked” gene and is carried by the mother.
If the mum has the gene, then there is a 50/50 chance the x-gene will go into the male child and they will inherit the change.
Courtney had no idea she was carrying the condition and has urged other parents to keep pushing for answers if they have concerns about their child’s health.
The second blow came when the couple found out Theo would also be born with the condition. They had to make a devastating decision no parent should be faced with.
Courtney said: “We were faced with the decision of do we continue with the pregnancy and we had to make it quickly. If we decided to go through with the termination, I’d have had to take a tablet to stop the heartbeat and the doctor would deliver the baby.
“I knew in my heart I had to have Theo. He had as much right to live and we knew we’d give that baby the world and the best quality of life possible.
“It was also so Oscar didn’t feel isolated as someone had the same condition as him and they were in it together. It’s created that strong bond.
“I feel for parents whose children have this condition and they don’t know. I’d urge them to follow their instincts, as, if they don’t, no-one else will. We don’t know how much time they ‘ve got, but we’re glad we know, as we can deal with it.”
Oscar walks with a frame and has a wheelchair, but no problems with talking and cognitive development.
He currently has physiotherapy and water therapy to help his movement and there are adaptations around the house to help him.
His family knows his health will deteriorate over time, as Theo’s will as he gets older, and he will not be able to walk when his muscles become stiffer.
He may also struggle to swallow his food and will lose basic skills, but his parents are doing all they can to give him the best chance.
Courtney has had to give up her job as a property manager to become a full-time carer for her children.
She said: “It is isolating sometimes but you try to do the best you can. Yes it is heart-breaking but where we are from 12 months ago is completely different. Our mindset is completely different and we can talk about it now.”
The family have been fund-raising so they can create special memories and days out with their sons, while helping with the cost of treatment not covered on the NHS.
Family friend Jamie Yeates will be stepping into the boxing ring at Couture Stafford on Friday, March 18, to take part in a charity boxing match to raise funds.
Anyone wanting to sponsor him can do so at https://www.gofundme.com/f/oscar-and-theos-pmd-journey-fundraiser.
The family also has its own Just Giving page at https://www.justgiving.com/crowdfunding/oscarvalentinotheodestefano.
The parents are sharing their journey on Facebook page “Oscar’s & Theo’s PMD Journey”.
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