TWO devastated parents have shared photos of their little girl to warn others of an incurable condition.
Little Dani-Rae Brown suddenly lost use of her legs due to a rare genetic illness.
Little Dani-Rae Brown was diagnosed with a spinal muscular atrophy (SMA) on November 15Jam Press
Jam PressMum Tyler (right) and dad Charlie (left) are warning other parents of the signs to look out for[/caption]
Jam PressThe parents first noticed something wasn’t right with their little girl in April 2022[/caption]
Now mum Tyler, 23, and dad Charlie, 26 are urging parents to get their little one’s checked out if you think something is wrong.
Dani-Rae was diagnosed with a spinal muscular atrophy (SMA) on November 15.
SMA is a disorder which causes weak muscle tone and muscle waste.
There is currently no cure for the condition and her parents said it could become fatal if it spreads to muscles surrounding her major organs.
Her parents have said they have been filled with stress, worry and fear around their 14-month-old’s life.
“The idea of losing her is devastating.
“When we first found out what was happening to Dani-Rae, we were so worried and frightened because all we saw on the internet were pages upon pages about kids not living past two years old.
“We’re doing whatever we can to get her life-saving treatment and want to raise awareness because the condition is so rare, so that other families know they are not alone,” they said.
The parents first noticed something wasn’t right with their little girl in April 2022.
They said Dani-Rae had started to experience reduced movement in her legs ‘overnight’.
Charlie said: “We had a very normal birth and Dani-Rae was so lively, so it was very unexpected.
“Back in April, Tyler rang me at work after she noticed that Dani-Rae had reduced movement in her legs.
The 6 syptoms of spinal muscular atrophy (SMA) you need to know
Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement, the NHS says.
Guidance states that it’s a serious condition that gets worse over time, but that treatment can help manage it.
The symptoms depend on the type of SMA you have but the NHS says the most typical include:
floppy or weak arms and legs
movement problems – such as difficulty sitting up, crawling or walking
twitching or shaking muscles (tremors)
bone and joint problems – such as an unusually curved spine (scoliosis)
swallowing problems
breathing difficulties
The experts add that SMA does not affect a person’s intelligence, nor does it cause learning disabilities.
“We took her to the hospital, where she had blood tests and scans but doctors couldn’t find anything wrong at first.
“She then went to a physiotherapist who spoke to us about their patients with SMA but it’s so rare not many medical professionals know about it.”
The youngster had an MRI scan and was then referred to the neuromuscular department at Noah’s Ark ward in Cardiff, Dani-Rae’s parents received her devastating diagnosis.
Dani-Rae has the most severe type of the illness, type one, which can sadly cause fatal respiratory failure in young children as the muscles around the lungs can’t cope with expansion.
There are treatments available to slow down the deterioration of muscles and give Dani-Rae a chance at independence, such as Zolgensma gene therapy.
‘HEARTBREAKING’
Charlie added: “She will never be able to walk again but we are going to try everything to give her the best chance possible of regaining as much movement back as she can.
“There are two types of treatment that could save her; gene therapy to hopefully stop further deterioration, and physio and hydro treatment to keep her muscles moving and hopefully build them up.
“We want her to have as much independence as possible. Dani-Rae is learning to speak and she is really smart.
“It’s heartbreaking to see her frustrated and we want her to be able to do things for herself.
“She’s a lively little girl and absolutely adores Peppa Pig. We want to share our story with other parents.
“If you do think there is something wrong with your child, share your concerns with the doctor because SMA can be caught early on.”
On December 14, the youngster is set to have gene therapy, along with some hydro and physiotherapy.
While this is funded by the NHS, the parents will also have to pay for continuous therapy for the rest of Dani’s life.
They have now set up a GoFundMe page and are hoping to raise £10,000 to put towards treatment.
Charlie added: “We are hoping to be out of the hospital by Christmas.
“If not, Christmas in the hospital for one year means nothing compared to the many at home in the future.”
Jam PressThe family are now trying to raise money for further therapy for their little girl[/caption] Read More