Baby can be saved from rare genetic disorder – but sister, 5, will die of it – Metro.co.uk

Posted: January 31, 2021 at 3:50 am

Five-year-old Addy, left, and three-month-old Ollie, right, both have the same genetic condition (Facebook)

A family faces a desperate race to raise enough money for their son to have life-saving treatment for a rare disease that will kill his five year-old sister.

The Rasberrys, from the Woodlands, Texas, need help to raise $500,000 for three-month-old Ollie to have treatment on a fatal genetic condition that attacks the central nervous system.

Its what his sister, Addy, aged five, has been suffering with since the age two leaving her unable to move, talk or eat, reports KHOU.

Tragically Addy will tragically die of rare genetic disorder, Metachromatic Leukodystrophy (MLD), but there is still time to save her little brother, Addys family has said.

The childrens mother, Victoria, said: My soul is tired. You know? Im weary, but Im trying to fight the fight and do what I need to do to save his life.

I dont know whats worse I dont know if its watching your child decline and not knowing whats going on or having a child and knowing that they will decline.

Its (the money) overwhelming, is the biggest thing that comes to mind, because we just have so little time to raise so much money.

Victoria added that Addy developed normally until about 15 months of age and then all of a sudden she started having trouble walking.

They visited a doctor for help and it took a long nine months to get Addy a diagnosis of MLD. Thats when Victoria said she learned it may be too late for treatment to save Addy.

They basically told us to go home and spend as much time with her as possible, to go on our Make-A-Wish trip and just enjoy her, she said.

Within two months of her diagnosis, Addy lost the ability to speak, eat and hold her head up.

Theres a lot of grief for what wont be and what she cant do anymore, Victoria added.

Its may sadly be too late for Addy but its not too late for Ollie, who was diagnosed with MLD shortly after birth.

The condition effects around one in every 40,000 babies born each year and is a progressive disease that is passed onto children from their parents via a faulty gene.

Because Addy has the disease, Victoria and her husband Zack knew it was important to test Ollie.

Victoria said: I was devastated, and I knew that we had to act fast.

Now they have the diagnosis Victoria and Zack can focus on giving Ollie the chance of survival via treatment. There is no recognized cure for MLD but theres a gene therapy procedure that has been approved for commercial medical use in Europe that could help.

Victoria said with the recommendation from his doctors in the US, doctors in Italy have agreed to treat him, but treatment has to start before Ollie is six-months-old.

It also costs $500,000 and the family need to raise the cash within the next few weeks. So far they have managed to raise more than $44,000 but need help from members of the public if they are to reach their goal.

To help the Rasberry family pay for Ollies life-saving treatment,click here.

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Baby can be saved from rare genetic disorder - but sister, 5, will die of it - Metro.co.uk

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