KeagansNextChallenge for 2013

Keagan is a happy and such loving 8 year old boy. The smile on his face hides the courage he has had to show during the past 2 years.When Keagan was a baby, we knew he wasn't the same as his older sisters. Something just seemed 'different'. He was slower to reach milestones and was not talking.

At 3 years old he was diagnosed with Dyspraxia, now known as Developmental Coordination Disorder. He has joint hypermobility, lax ligaments and severe hypersomnia.   

He wears hearing aids for his bilateral hearing loss. 

Keagan seemed to tire very quickly and needed far more daytime sleep than my previous 3 daughters. His health was gradually declining with his fatigue becoming more and more of a problem and affecting his every day life. Once he started at school he would come home and sleep for hours.

His paediatrician decided to carry out a routine brain scan to rule out a tumour in January 2011, just a month before his 7th birthday. The results came back the following week showing that Keagan was suffering with Hydrocephalus - Life threatening water on the brain. The additional fluid was putting pressure on our little boys brain and had bowed the floor of the 3rd ventricle. 

We were referred to the Neurosurgery team at Southampton Hospital. After seeing the Neurosurgeon, Keagan had to go into hospital to have an ICP (Intra Cranial Pressure Monitor) put into his brain to measure the fluid pressure. 

The results of this showed that Keagan had significant raised pressure in his brain when he was asleep/laying down. It was decided that Keagan urgently needed to have a VP Shunt fitted to drain the excess fluid into his tummy.

The ICP bolt was removed from his head whilst Keagan was awake ..and breathing on gas&air. The bolt was unscrewed from his skull and the spike/probe gently pulled out of his brain. He didn't complain at all, he just said the gas&air was "cool".

The following week the VP Shunt was fitted. Nothing can prepare you for your child going down to theatre for brain surgery or for coming out of theatre with a horseshoe incision on the back of their head and something noticeably burrowed into their skull. In typical Keagan fashion, just 3hrs later he was sat up playing on the PlayStation and having the nurses waiting on him hand, foot and finger! (Should we really have expected anything less?)

Keagan's fatigue and lethargy did not improve with the insertion of the VP shunt, although his headaches disappeared over night. 

It was decided that Keagan needed investigations for the condition Narcolepsy/Cataplexy. 

Keagan was admitted into the Spire Hospital in Southampton on the 18/02/2012 for a specialist sleep study (MSLT and Sleep Latency Test) - These tests were conclusive of Narcolepsy. (Probable Secondary) 

Keagan is now taking strong stimulants throughout the day. In November 2012, Keagan was diagnosed with Cataplexy, following some Cataplexic attacks. Keagan recently suffered an attack and his tooth punctured his lip. This is now being medicated, however he still has had a couple of 'drops' so we are always on guard. 

This has likely been caused by the pressure in his brain for so long before the diagnosis and treatment of Hydrocephalus. 

 

Keagan still suffers with extreme sleepyness. He takes stimulant medication and has regular naps at school and is supported 1:1 - Despite this, Keagan is not always able to maintain a full week at school. 

Despite everything, Keagan is the happiest little boy. Always smiling - A smile that's so contagious! :-) 

 

Keagan has recently raised almost £2,500 for the Specialist Pre School he attended... 

 

He has been desperate to start his fundraising again and he chose 'Shine' as the charity he wants to raise money for. 

His Shine Benny Bear goes everywhere with him!  

Keagan has chosen this charity as they are very close to his heart and they support many children just like him. 

PLEASE SUPPORT OUR BRAVE HERO

YOU CAN TEXT DONATE TO HELP KEAGAN REACH HIS £500 GOAL-   

 

text: KEAG99 £(1,2,3,4,5,10...) to 70070

 

Thankyou so much for your support of this very special charity x 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.