Julianna Taggart
Our Big Fun Run
Fundraising for The Lily Foundation
Story
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We will be running the Edinburgh Big Fun Run on Sunday 11th October for the Lily Foundation in Memory of Kaylan.
We want to raise awareness about Mitochondrial disease, who it affects and what it means.Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. It is estimated that 1 in 4,000 people has Mito. It’s progressive, life limiting and unfortunately at present there is no cure. The average life expectancy when present at birth is currently 15 months.
The Lily Foundation has three aims: To fund research to improve diagnosis and increase treatment options, and ultimately find a cure. To raise much needed awareness of these conditions both in the general population and the medical community. To support families affected by this condition.
We are doing this as Kaylan was diagnosed with an aggressive form of Mitochondrial Disease in July 2015.
Kaylan was born on the 25th July 2014 at 0315 weighing a healthy 8lbs 0oz. He was like any other new born baby, beautiful and full of smiles.
As the weeks went on his mummy noticed that he still had very little head control and was being very sick after his bottles. She took him to the doctors and was given infant Gaviscon to help with what they thought was reflux.
Months passed with still no improvement, several hospital visits and no answers to any of her questions. In March Kaylan was given a feeding tube to assist with his feeds and spent weeks in hospital, finally he began to put on some weight and was discharged from Yorkhill Royal Hospital.
On the 28th June, Kaylan went on holiday to Zante with his big sister, Mum, Gran, Grandad and Uncle. He had an amazing time during their week, splashing in the pool and going on the boat trip - even came home with a lovely tan and was looking much healthier.
Early hours of the 9th July, Catherine was woken by Kaylan twitching in his moses basket - she called NHS 24 and explained his symptoms. Kaylan was then taken to Monklands Hospital where he was sedated and transferred to the New Sick Kids Hospital in Glasgow. He spent several weeks in intensive Care due to his seizures however our wee fighter proved to the doctors that it was not his time to go and kept fighting on. With the help of a Ketogenic diet, Kaylan was out of intensive care within a few weeks and was breathing without the aid of the oxygen tubes - something that the doctors didn't think he would get to do.
Sadly after being so brave and fighting the disease for over 3 months, it all became too much for him to take and he lost his battle to the disease on 19th September 2015. Kaylan passed away peacefully in his mummy's arms at CHAS Robin House in Balloch aged 14 months.
Any donation, no matter what the amount will make a difference.
This is a disease that can affect anyone regardless of your age or previous health records.Thank you for reading our Story
x
We will be running the Edinburgh Big Fun Run on Sunday 11th October for the Lily Foundation in Memory of Kaylan.
We want to raise awareness about Mitochondrial disease, who it affects and what it means.Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. It is estimated that 1 in 4,000 people has Mito. It’s progressive, life limiting and unfortunately at present there is no cure. The average life expectancy when present at birth is currently 15 months.
The Lily Foundation has three aims: To fund research to improve diagnosis and increase treatment options, and ultimately find a cure. To raise much needed awareness of these conditions both in the general population and the medical community. To support families affected by this condition.
We are doing this as Kaylan was diagnosed with an aggressive form of Mitochondrial Disease in July 2015.
Kaylan was born on the 25th July 2014 at 0315 weighing a healthy 8lbs 0oz. He was like any other new born baby, beautiful and full of smiles.
As the weeks went on his mummy noticed that he still had very little head control and was being very sick after his bottles. She took him to the doctors and was given infant Gaviscon to help with what they thought was reflux.
Months passed with still no improvement, several hospital visits and no answers to any of her questions. In March Kaylan was given a feeding tube to assist with his feeds and spent weeks in hospital, finally he began to put on some weight and was discharged from Yorkhill Royal Hospital.
On the 28th June, Kaylan went on holiday to Zante with his big sister, Mum, Gran, Grandad and Uncle. He had an amazing time during their week, splashing in the pool and going on the boat trip - even came home with a lovely tan and was looking much healthier.
Early hours of the 9th July, Catherine was woken by Kaylan twitching in his moses basket - she called NHS 24 and explained his symptoms. Kaylan was then taken to Monklands Hospital where he was sedated and transferred to the New Sick Kids Hospital in Glasgow. He spent several weeks in intensive Care due to his seizures however our wee fighter proved to the doctors that it was not his time to go and kept fighting on. With the help of a Ketogenic diet, Kaylan was out of intensive care within a few weeks and was breathing without the aid of the oxygen tubes - something that the doctors didn't think he would get to do.
Sadly after being so brave and fighting the disease for over 3 months, it all became too much for him to take and he lost his battle to the disease on 19th September 2015. Kaylan passed away peacefully in his mummy's arms at CHAS Robin House in Balloch aged 14 months.
Any donation, no matter what the amount will make a difference.
This is a disease that can affect anyone regardless of your age or previous health records.Thank you for reading our Story
x