Brave young boy Freddie Elwood is battling a rare disorder that affects just one in 1 million people – his parents are hoping to raise funds for gene therapy costing millions
A brave young boy is battling an extremely rare and incurable condition, leaving his family “shattered”. Little Freddie Elwood has Infantile Neuroaxonal Dystrophy (INAD), a rare disorder that affects just one in 1 million people.
Freddie, from Upminster, needs treatment or he might not reach his 10th birthday as there is no cure for his condition. His parents, Emily, 33, and Louis, 40, are desperately trying to raise funds for a clinical trial with over £30,000 raised so far. The first sign Freddie’s parents noticed something was wrong was when he was 16 months old.
He had learned to crawl, pull himself up and had begun saying basic words such as “mumma” and “dadda” and he could imitate a lion’s roar, but suddenly started to lose his balance. Freddie, born in May 2021, also started to scream and cry. “It was a little strange and was the first sign of something not being right,” mum Emily said to Essex Live. “He went within himself a bit. We lost him a little bit.”
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INAD is a devastating disorder that heavily affects the brain and nervous system. Progressive symptoms can begin between six months and three years and leaves patients completely dependent on their families, carers and the healthcare system. Even more tragically, it has a life-expectancy of around ten years.
Emily and Louis’ glimmer of hope is advancements in medical research have suggested that a form of treatment could be available. The American charity INAD Cure says they are working on “miracle-pioneering” gene therapy but $1.8 million (£1.3m) is needed for drug manufacturing and $3 million (£2.2m) is needed for clinical trial costs.
“Funding is a big part of it because Freddie’s condition is so rare that for people to invest, these companies want a return and there’s no profit in it because there’s not enough children with the condition,” Emily said. “It’s baffling to us when there’s something out there that could save children. We are running out of time. Time is of the essence, we’ve not got years to wait to come as Freddie does not have years to live.”
She added: “All the testing they have done so far is really hopeful and it’s thought to be the closest the scientists have seen to a cure in all their research. We just want to really get the word out there, raise awareness and hopefully get it funded in time.”
The pain Emily and Louis have felt has been difficult for the couple to bear. “To not only be told he had a life-limiting condition but to back that with that there was nothing they could do for us or my son, it’s just heart-breaking and wrenching,” Emily said.
“It shattered our world. We have an older son, Henry, and I kept thinking I would have to go home and somehow get up every day and face the world knowing that if nothing changes we will lose Freddie before he turns 10. I’ve got to tell my other child that he’s going to lose his brother.”
“If you have a baby and are told at the beginning that something is wrong then that’s your life and you’re thrown into it. But to have him perfectly fine for months and then be told that, it’s like you’re grieving the life that you have had and it’s being taken away from you day by day and there’s nothing you can do about it.
“If you lose someone you spend time moving on. Although you never get over it, you move on as time is a healer. But we are sat in this desperate place every single day trying to put one foot in front of the other knowing that if nothing changes he will die and there’s nothing we can do.”
Emily set up a fundraising page hoping to receive a few thousand pounds to go towards the campaign, but after a matter of days almost £35,000 has been collected. It has come from hundreds of donors, including many anonymous who have found out about Freddie and wanted to support financially.
She said: “The love, support and sharing means everything. I know anyone with children would read our story and it’s touching as they would hate to be in our position but to donate and spend their money the way the world is [at the moment] is great. It’s beyond anything we could ever imagine and it’s only been a few days. We hope that if we keep pushing it could really reach far.”
“We felt so helpless the last 18 months and that’s the worst part of things,” she added. “The only thing we can do is keep going for them, putting one foot in front of the other. This has given us a reason and something to cling onto and fight with all our energy to see until the end.”
You can support the fundraiser for Freddie by clicking here. You can also find out more about his condition and journey on Instagram here.