Hampshire style blogger shaves her head to raise vital funds for boy’s Stem Cell treatment

A 21-year-old girl has shaved her head in a bid to raise the £30,000 a young boy desperately needs for Stem Cell Treatment.

Chloe Miles, from Aldershot, shaved her head to help her friend, four-year-old Enzo, from Odiham, who was diagnosed with Cerebral Palsy when he was just a few months old.

Chloe met Enzo when she began volunteering with Sebastian’s Action Trust, a charity that supports the families of seriously-ill children. Chloe’s younger brother Dylan had Wolf Hirschhorn Syndrome, a rare genetic disorder, and sadly passed away. Shortly after, Chloe began volunteering with the charity and was paired with Enzo and his family to help support them through helping with the shopping, daily household chores or simply playing with Enzo.

Chloe said: “The Trust couldn’t have picked a better match. I very quickly fell in love with Enzo’s cheeky personality and instantly clicked with Enzo’s mum, Caroline. I actually only visited once through the charity before we exchanged numbers and for the last two years I’ve been welcomed as a family friend instead of a volunteer.

“I feel so lucky to be able to watch Enzo and his little brother Luca grow and develop. I volunteered to help Enzo and his family but I think they’ve actually been the ones helping me. When Dylan passed away I had no one to be silly for, no one to entertain and interact with in the way that I’d known for my whole life with Dylan.”

Becoming friends with Enzo helped Chloe enormously through her grieving process, so when Caroline mentioned that they hoped to do Stem Cell treatment to help Enzo’s condition, she desperately wanted to find a way to help them raise the funds.

Chloe decided to shave her head and set up a JustGiving page in the hope that people would donate towards his treatment, and has shared it on social media using ‘#EnzosStemCellAppeal’.

She said: “When I was about seven or eight years old I heard about someone shaving their head for charity and I decided that if Dylan ever needed money raised I would shave my hair off for him. Unfortunately when Dylan got ill there was nothing I could do, there was no treatment and no amount of money could have helped him.

“I’ve seen first hand the effect that the first round of Stem Cell Treatment had on Enzo, his progress was incredible to watch. There is of course no guarantee that the second round will have the same effect but if it does it could improve Enzo’s quality of life drastically and hopefully lead to him living independently when he’s older.”

Chloe shaved her head at The William Cobbett, in Farnham, and held a fundraising day on 2 September.

Although she is still getting used to her short hair, she said she feels fantastic and the amount of support she’s received has been incredible.

So far almost 200 people have donated to Chloe’s JustGiving page and more than £4,400 has been raised out of her £30,000 target.

Enzo’s mother, Caroline, said: “Enzo is such an incredible boy. We do various types of physio with him every day, which he finds difficult and exhausting, but he has such strength and determination, he understands that the work that we do with him is beneficial to his development so he never puts up a fight. He works so hard to achieve what many would consider to be the simplest of tasks, but for Enzo, any achievement is a massive achievement. Life for him is tough, he has to constantly push on and work hard, but he is the happiest little boy, with a fantastic personality, sense of humour and inspirational drive for life.

Stem cell treatment could help Enzo in various ways. This will be his second round. After his first round of treatment we noticed significant changes in his ability. For example, he gained better head control so that he can sit in his chair or supported by me for longer periods of time and gained better fine motor skills, so he is now able to reach for a toy and grasp it in his hand. We hope that another round of treatment will help him to the same degree if not more so.

With the stem cell treatment we hope that in the future, at the very least, Enzo will gain the ability to live as independently as possible. We hope that he will gain even better head, arm and hand control and movement so that he can sit un supported/assisted, be able to lift himself, for example, from a chair to a bed and to gain the skills needed to operate a power wheel chair.”

To donate to the JustGiving page, visit https://www.justgiving.com/crowdfunding/shavingmyheadforenzo

Krabbe: The Disease That Needs More Awareness

I had not heard of Krabbe disease until 2011, when a relative was diagnosed with it. Krabbe is also called Globoid cell leukodystrophy; Galactosylcerebrosidase deficiency; Galactosylceramidase deficiency. It is a rare genetic disorder of the nervous system and is a type of leukodystrophy. It is named after the Danish neurologist Knud Haraldsen Krabbe who discovered it.

Krabbe disease is caused by a defect in the GALC gene. People with this gene defect don’t make enough of a substance called galactocerebroside beta-galactosidase (galactosylceramidase).

This is needed by the body to make myelin, the material that surrounds and protects nerve fibers. Myelin breaks down without it, brain cells die, and nerves in the brain and other body areas do not work properly.

There are two forms of Krabbe disease.

  • Early-onset Krabbe disease appears in the first months of life.
  • Late-onset Krabbe disease begins in late childhood or early adolescence.

Krabbe disease is inherited, which means that it runs in families. To get this disease, each of your parents must pass you a copy of the faulty GALC gene.

This condition is very rare, Affecting 1 in 100,000 births.

Symptoms

  • Changing muscle tone from floppy to rigid.
  • Hearing loss that leads to deafness
  • Feeding difficulties
  • Irritability and sensitivity to loud sounds
  • Severe seizures
  • Unexplained fevers
  • Vision loss that leads to blindness
  • Vomiting

The condition is often misdiagnosed as cerebral palsy.

There is no specific treatment for Krabbe disease.It is possible to have a bone marrow transplant in the early stages of the disease, but this treatment has risks.The outcome of Krabbe is usually not good. On average, infants with Krabbe die before age 2. People who develop the disease at a later age have survived into adulthood with nervous system disease.

A blood test can be done to see if you carry the gene for Krabbe disease and prenatal tests can be done to screen a developing baby for this condition.

http://www.savebabiesuk.org/

United Leukodystrophy Foundation — www.ulf.org

http://www.krabbes.com/

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