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Brave Alfie Clay loses his fight against disease, aged six


A young disabled boy whose fight for life against an incurable disease inspired fund-raisers, friends and family has died.

Alfie Clay was 18 months old when doctors told his parents, in 2008, he had Krabbe disease and would probably die within six months.

However, the youngster fought the condition and lived to celebrated his sixth birthday last month.

He died on Sunday, after suffering a seizure at his home in Wigston.

Alfie's mother, Sarah Baxter, 34, said: "I am totally lost without him.

"He was an incredible fighter and he was my life. I don't know what I am going to do now."

Sarah said she became aware there was a problem at 7am on Sunday.

"Alfie slept in my room and over the years I have become accustomed to how he breathes," she said.

"Whenever there is a change in his breathing pattern I wake up. I heard a change on Sunday morning and turned the light on.

"I could see he was having a massive seizure but there was nothing I could do to help him.

"I called the ambulance and they came and took me and him to hospital.

"I was glad I was there with him at the end and I was able to hold his hand. The doctors said he was brain dead after the big seizure.

"He had no chance. He had fought long and hard and it was his time to go."

Krabbe disease, also known as leukodystrophy, is an incurable degenerative disorder which shuts the body down.

Alfie became completely blind, deaf and was left severely disabled by the condition.

Shortly after her son's diagnosis, Sarah and friend Jenny James set up the Alfie Appeal to raise money for leukodystrophy charity The Myelin Project, and to raise awareness of the condition.

They organised a series of fund-raisers and collected £15,000 for the appeal.

Alfie's grandmother Audrey Birchall, of Sapcote, said the family intended to carry on fund-raising in Alfie's name.

She said: "We are going to launch another big fund-raising day and get more money in for the appeal.

"The more people know about these kinds of conditions, the better.

"Sarah is devastated at losing Alfie. She has a 13-year-old daughter, Phoebe, and those two are my main concern at the moment.

"As a family, we will continue with the Alfie Appeal. When we raised money we got donations from people all over the country. It was lovely to know Alfie had touched people so far away who did not know him."

Lynda Carthy, spokeswoman for the Myelin Project, said: "It is very sad to hear Alfie has lost his fight.

"He was a very brave and courageous little boy who amazed everyone.

"We have had donations from his family and we are very grateful for these.

"His mother was very focused on trying to help find a cure to try to stop other families going through what they have. It is good to hear they intend to carry on raising money in Alfie's name."

To support the appeal and find out more about the condition, visit:


Brave Alfie Clay loses his fight against disease, aged six

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