Weʼve raised £555 to fund travel costs to London for medical review and further treatment, which is not available in Scotland.
- Funded on Friday, 27th September 2019
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Chance, 3, has an extremely rare genetic condition called Glycogen Storage Disease (GSD) type 9a.
This means that Chance cannot breakdown or release glycogen from his liver where it is naturally stored. He primarily suffers from enlarged liver (when undertreated can lead to scarring and cirrhosis), chronic hypoglycaemia, chronic ketosis and ketoacidosis, lactic acid of the blood, slow growth and vitamin deficiency.
Secondary symptoms are vomiting, diarrhoea, lethargy, pale skin, low energy, sore tummies which all cause distress.
Scotland does not have the knowledge or the resources to treat and care for our son and his condition.
Chance is the only person in Scotland with this sub-type – there are around 45 people in the country with GSD and around 30 of those are made up from type 5 aka ‘McArdles Disease’.
After a six-month battle our son was seen for a second opinion in Evelina Children’s Hospital, London in May 2019 and Dr Mundy and the metabolic team there have started my son on a strict feeding plan.
When treated, the results are fast acting and we are pleased to say that we have already seen an improvement in our beautiful son in a matter of weeks.
We are hoping to raise money to fund the travel costs to and from London for Chance’s review on July 29, 2019, as NHS Scotland’s funds and support are limited.
Our event will be held in Canal Station bar on Sunday June 16, 2019.
I have made this page as I am aware many people would like to donate, but cannot make the event.
Thank you kindly for taking the time to read this and support us.
Updates appear here
Amanda Crawford started crowdfunding
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Jun 26, 2019
Jun 25, 2019
Jun 21, 2019
Good luck guys 👍
Jun 20, 2019
Hope all goes well.Best wishes Florence x
Kenny Murray - Augean
Jun 18, 2019
Jun 17, 2019
Hope all went well.Nikki, Augean Aberdeen
Jun 17, 2019
Hope you all had a great time yesterday 💙🤗
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