Making each day count for Rylan
Donation protected
Hi everyone, I have created this GoFundMe page because sadly in May 2021 my dear friend’s life was turned upside down. Natasha received the news that her beautiful 5 year old son Rylan was diagnosed with Metachromatic Leukadystrophy.
Our gorgeous little man Rylan was born perfectly healthy. He reached all of his milestones at the appropriate age and was a very smart, loving and affectionate kid. But in October 2020 he started showing alarming signs like behavioural changes, aggressive outbursts, his right foot would turn out and he became easily frustrated which was very unlike him.
Natasha decided to take Rylan to the doctors to get multiple tests done as she knew something wasn’t right. After many hospital stays, several doctors appointments and months passing by painfully watching her sons health rapidly decline, Rylan has now been diagnosed with Metachromatic Leukadystrophy.
In just a matter of months Rylan has gone from a healthy and active 5 year old boy to being unable to walk unassisted, back in nappies, his speech has deteriorated significantly, he now talks really slow and is slurring his words. Unfortunately, his health is going to get worse. Rylan now has the cognitive function of a 2 year old.
The specialists have said there is nothing more they can do for Rylan and that we should just enjoy him while we can.
The medical professionals have predicted Rylan to be nonverbal, tube fed and wheelchair bound by the end of the year. The wheelchair Rylan needs is approximately $10,000 because he needs a wheel chair specifically designed to fit his needs. This will also mean that Natasha will need to purchase a van to accomodate his $10,000 wheel chair as he will be sitting in his chair whilst travelling in the car. Rylan will also need a special chair for at home just for sitting which is anywhere from $2,500. Furthermore this family will need special equipment installed in their home for lifting, bathing and showering needs and to make nappy changing easier, plus so many more personal care needs.
What I ask of you is to imagine being told your once healthy child has a rare and untreatable disease and to just enjoy the little time you have left with him. This is a parent’s worst nightmare.
I have never created a GoFundMe page before, but I feel I have to for my best friends family because they are the type of people who would give the shirt off their backs to help anyone.
Rylans parents Natasha and Trent Hallworth need to be home with Rylan as much as possible but financially that’s near impossible as they both need to work full time jobs to stay afloat and provide for their 3 beautiful children.
My goal for this GoFundMe page is to raise as much money possible for this beautiful family so they can afford to buy the necessities for Rylan so he can live his days as comfortable as possible.
We need to raise money and awareness for Rylan so his parents can afford the highly expensive costs of a wheelchair, making their home wheelchair accessible, medical bills etc. I truly hope we can raise enough money to give them the freedom of staying home with Rylan so he can have the best life possible whilst he is still coherent and aware of his surroundings because as mentioned, sadly the doctors said he will be unable to walk, unable to speak, tube fed by Christmas and advised Natasha and Trent to just enjoy him while they can.
Tash is one of the most selfless people I know, she is the best mum to her 3 kids and I am absolutely gutted this living nightmare is now her reality. She never asks for anything and has always been a giver. She never complains and still walks around with a smile on her face for her sick little boy. I honestly don’t know how she does it.
Please I am begging you to donate money for this loving family. Any amount helps. I can only imagine the pain they are feeling from watching their once active, bright and boisterous son deteriorate right before their eyes. Just the wheelchair Rylan needs is $10,000 alone.
Please share this GoFundMe page as much as possible to help raise money for our beautiful Rylan. No child should suffer like this and unfortunately, it’s just the beginning.
Metachromatic leukodystrophy (MLD) is a rare hereditary disease characterized by accumulation of fats called sulfatides. This causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system. There are three types of MLD based on the age symptoms appear: late-infantile MLD, juvenile MLD, and adult MLD. All subtypes ultimately affect both intellectual and motor function.
Any donation is greatly appreciated.
Thank you, Brooke xoxo
Our gorgeous little man Rylan was born perfectly healthy. He reached all of his milestones at the appropriate age and was a very smart, loving and affectionate kid. But in October 2020 he started showing alarming signs like behavioural changes, aggressive outbursts, his right foot would turn out and he became easily frustrated which was very unlike him.
Natasha decided to take Rylan to the doctors to get multiple tests done as she knew something wasn’t right. After many hospital stays, several doctors appointments and months passing by painfully watching her sons health rapidly decline, Rylan has now been diagnosed with Metachromatic Leukadystrophy.
In just a matter of months Rylan has gone from a healthy and active 5 year old boy to being unable to walk unassisted, back in nappies, his speech has deteriorated significantly, he now talks really slow and is slurring his words. Unfortunately, his health is going to get worse. Rylan now has the cognitive function of a 2 year old.
The specialists have said there is nothing more they can do for Rylan and that we should just enjoy him while we can.
The medical professionals have predicted Rylan to be nonverbal, tube fed and wheelchair bound by the end of the year. The wheelchair Rylan needs is approximately $10,000 because he needs a wheel chair specifically designed to fit his needs. This will also mean that Natasha will need to purchase a van to accomodate his $10,000 wheel chair as he will be sitting in his chair whilst travelling in the car. Rylan will also need a special chair for at home just for sitting which is anywhere from $2,500. Furthermore this family will need special equipment installed in their home for lifting, bathing and showering needs and to make nappy changing easier, plus so many more personal care needs.
What I ask of you is to imagine being told your once healthy child has a rare and untreatable disease and to just enjoy the little time you have left with him. This is a parent’s worst nightmare.
I have never created a GoFundMe page before, but I feel I have to for my best friends family because they are the type of people who would give the shirt off their backs to help anyone.
Rylans parents Natasha and Trent Hallworth need to be home with Rylan as much as possible but financially that’s near impossible as they both need to work full time jobs to stay afloat and provide for their 3 beautiful children.
My goal for this GoFundMe page is to raise as much money possible for this beautiful family so they can afford to buy the necessities for Rylan so he can live his days as comfortable as possible.
We need to raise money and awareness for Rylan so his parents can afford the highly expensive costs of a wheelchair, making their home wheelchair accessible, medical bills etc. I truly hope we can raise enough money to give them the freedom of staying home with Rylan so he can have the best life possible whilst he is still coherent and aware of his surroundings because as mentioned, sadly the doctors said he will be unable to walk, unable to speak, tube fed by Christmas and advised Natasha and Trent to just enjoy him while they can.
Tash is one of the most selfless people I know, she is the best mum to her 3 kids and I am absolutely gutted this living nightmare is now her reality. She never asks for anything and has always been a giver. She never complains and still walks around with a smile on her face for her sick little boy. I honestly don’t know how she does it.
Please I am begging you to donate money for this loving family. Any amount helps. I can only imagine the pain they are feeling from watching their once active, bright and boisterous son deteriorate right before their eyes. Just the wheelchair Rylan needs is $10,000 alone.
Please share this GoFundMe page as much as possible to help raise money for our beautiful Rylan. No child should suffer like this and unfortunately, it’s just the beginning.
Metachromatic leukodystrophy (MLD) is a rare hereditary disease characterized by accumulation of fats called sulfatides. This causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system. There are three types of MLD based on the age symptoms appear: late-infantile MLD, juvenile MLD, and adult MLD. All subtypes ultimately affect both intellectual and motor function.
Any donation is greatly appreciated.
Thank you, Brooke xoxo
Organizer and beneficiary
Brooke Flanagan
Organizer
Wedderburn, NSW
Natasha Hallworth
Beneficiary