The mother was devastated by the diagnosis doctors gave her two-year-old son, but said she will make the most of the time she has with him.
Rebecca Griffiths from Knutton, Staffordshire, has three children. She became concerned when her two-year-old son Reggie developed incredibly slowly and took him to a doctor.
Instead of being told he was just learning slowly, she received the news that her little boy suffers from Sanfilippo syndrome, a disease that is also referred to as "childhood dementia."
The condition is often characterized by broad noses and big foreheads, which helped lead to Reggie's diagnosis. Children diagnosed with this disease don't live past 20 years old.
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Griffiths has been warned that her son's brain is very damaged, so she may have even less time with him than 20 years. She said:
“Me crying or falling apart won’t help him, I want to make the most of him while he’s with me.”
The tot is in the third stage of the illness, which is characterized by hyperactive, non-verbal behavior. The third stage involves rapid deterioration, and once this phase sets in sufferers won't have long left to live.
"The body shuts down and then he will forget everything he has learned. When people ask me to explain it the best way is its like dementia in a child.”
The disease affects approximately just one in 70,000 children.
Griffiths also has to worry about her son's breathing, as the disease can cause "very big tonsils and a thin airway," and problems with the heart's valves.
“I don’t think he will ever learn to talk. He is a very happy child though and is just lovely but I don’t think I’ll ever hear the sound of his voice.”
She has since started a fundraiser for the condition in the hopes that science will one day be able to find a cure for future children, even if it will be too late to save Reggie.
"I hope one day they will and someone will be able to say ‘my child used to have that,’” she said.
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