I have been growing my hair since 2019 and now its time to have it shortened for a good cause. The charity I have chosen is daisy garland after learning about the work they do through a inspirational little boy, Jacob, and his family who have been become friends. My hair is currently touching my bum! and I do love having it long but I feel its time to give it the chop and support a charity in the process.

JACOBS STORY (FROM MUM)

Jacob is eight years-old and he loves football.

Jacob’s favourite team is Manchester City. He also loves being outdoors and playing with his friends. He is the most sociable person I know. He is happy and chatty, and for the most part, very much like many other little boys his age. Jacob does, however, face many hidden challenges which without getting to know him and hearing from those who help to look after him you wouldn’t know about.

He has a rare genetic condition called Glut1 Deficiency Syndrome.
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Glut1 is a very rare genetic disorder which impairs the effective transport of glucose to the brain
which leads to impairment of brain function and growth. Jacob first showed symptoms of Glut1 at
eight weeks old when he started having seizures. However, he was five before he received the
correct diagnosis, initially having been diagnosed with epilepsy.

In addition to seizures, Jacob also experiences muscle spasms and pain in his legs (dystonia),
significant challenges with mobility and balance (ataxia), he has episodes where he experiences loss of functioning in his limbs and is dazed and confused and he has a learning disability. Every day he faces significant challenges but if you met him you would be unlikely to know of the hidden struggles he experiences.

There is no cure for Glut1, but many of the symptoms can be managed through a specialist diet: the ketogenic diet. This is a low carbohydrate, high-fat diet which leads to the body making ketones which the brain then uses as an alternative fuel to glucose. Whilst the diet has been life-changing for Jacob, it also adds to his challenges. All his meals are carefully planned and weighed to ensure he maintains a state of ketosis. This means he cannot have any food which hasn’t been specially prepared for him. He also needs blood tests at least twice a day, sometimes more frequently if he seems unwell, to check his ketone levels.

Jacob is supported by a great medical team at Manchester Children’s Hospital which includes his
amazing dietician without whom we would have struggled to maintain the ketogenic diet. Funding
for many of the ketogenic dieticians in the UK comes from The Daisy Garland Charity, a charity set up in the memory of a very special little girl, Daisy, by her parents. The support The Daisy Garland has provided for Jacob, and many other children, has literally been life-changing for him.

Lidia Jones