Thanks for taking the time to visit Jack and Kierans JustGiving page. Here's their story:

Kieran's mum, Jackie recalls: In September 2008, Kieran was 4 & a half, & had just started Primary 1. It would be sometime in Primary 3 before Kieran attended school full time.
 The first symptom we remember was Kieran complaining of being unable to flush the toilet, which was a button, his hands "felt funny" & he couldn't push the button down. He had also been tiring easily throughout the day. We then had nights of Kieran being up with back pain, & no matter what pain relief we gave him it didn't have any affect & we couldn't seem to comfort him, he was in agony. Docs came out through the night, baffled, must be a virus, but it always seemed to ease through the day. We would go to the gp during the day & again they agreed viral. I remember one gp saying he must've fallen at school and hurt his back. Kieran was adamant he hadn't, & surely he'd remember a fall if it was bad enough to cause that much pain?! Finally, on the last ADOC call out, the doc said get him back to gp and demand bloods, frankly its not normal for a child to have severe back pain. By this time it seemed to affect Kieran's movement, but they thought it was the way he was holding himself due to the pain. This was only over 3 or 4 days.
 The next day Kieran seemed to go downhill in front of our eyes, particularly his movement. We went back to the GP, where again were told viral. This time though I demanded a 2nd opinion. I knew something wasn't right. Dr reluctantly phoned Crosshouse, who replied send them straight up!
 In the space of arriving, sitting in the waiting room,& being seen by the first port of call, Kieran could barely walk, he kept falling over & his balance was off. I think we saw every Dr, Consultant, etc under the sun in a&e, had xrays, mri scans, ct scans, bloods, you name it, they couldn't understand what was going on or what it was. He was admitted. And it was terrifying! I fully expected once at hospital, they'd assess Kieran & we'd pretty much have an answer to what the problem was.
 Over the next 3 days Kieran had more tests done, including 2 lumbar punctures, they tried their best to manage his pain, & would come up with various ideas as to what may be wrong, but each one was incorrect.
 He was in so much pain, we couldn't even hold him to comfort him-due to the nerve pain, every inch of him hurt. It was heart-breaking. By now he couldn't walk unaided or support himself. Then they had a conference call with Yorkhill...that's when they realised he possibly had Guillain Barre Syndrome. Its rare. We'd never heard of it. Straight away we were told don't google it.
 We googled it! And immediately realised why they'd told us not to! We came across a case of the patient dying!
 The next day we were taken to Yorkhill where they had to carry out one more test to confirm diagnosis. A nerve conduction test.It checks the nerves responses to stimulation. Kieran found this painful,& it did indeed confirm Guillain Barre Syndrome.
 They continued to monitor Kieran closely, the paralysis could spread up to Kieran's chest & lungs & then he'd need to be ventilated & move to intensive care. Thankfully this didn't happen. They decided not to treat Kieran with intravenous immunoglobulin or plasma exchange. They felt that at Kieran's age it was too risky, they also believed it was beginning to plateau & so confirming it was a mild case.
 Kieran was in hospital for 2 weeks, we had a room to ourselves,& on the 2nd week physio came to help with Kieran's movements & building his strength. He lost a lot of weight & wasn't particularly eating so the dietician was involved also.
 There was a lot of input once we were home, with physio, OT, dietician etc & regular check ups with his consultant. Kieran's balance took a while to come back, he had to basically learn to walk again, gross motor skills as well as fine motor skills, hand & eye co-ordination with pincer grip for fastening buttons, holding cutlery, a pencil, everything you take for granted really! He had 13 different medications/pain control to take, & he tired very quickly.
 It took over 2 years to fully recover, Kieran seemed to make good progress, but plateau for a while & even take steps back. Pain in his feet was always a big problem & fatigue. It took years for his running to become "normal". As you can imagine his confidence took a huge knock, & he would be very frustrated at not being able to keep up with his peers. This has continued at various times throughout the 8 years. Im not actually sure when Kieran was classed as fully recovered, but to look at Kieran now you wouldn't have any idea. We continue to see his consultant every 6 months.
 Kieran has been left with some residual weaknesses. He lacks stamina & speed,& still has bother with fatigue if he has a lot on physically. Now and again he will complain of pain in his feet. He has pain with his wrists if doing written work for any great length of time. He has his own way of holding a pencil or cutlery but that's how he finds it most comfortable now & he manages great. In Primary school written work was easily managed, so far in secondary school the staff & OT have been very helpful & we've found solutions. As Kieran gets older there will be other obstacles im sure, but we'll find new solutions & Kieran im sure will continue to take it in his stride.
 Due to Guillain Barre Sydrome being so rare, particularly in children, not many medical professionals had experience in dealing with it,& so most of the time, couldn't answer our many questions. It felt like a very isolated time. We had lots of support from family & friends but the internet became our source for information & guidance. This is where I found GAIN. Originally under a different name, they were a superb help, posted out information leaflets, a specific child friendly booklet for Kieran to help him understand & also put us in touch with another parent through email who had shared a similar experience. They also have a fbook page where its not so rare after all! They are a charity & rely on donations from the public. They provide free support & advice to those affected, with Guillain Barre & other associated inflammatory neuropathies, & their family and friends. They also help fund valuable research.

 What is GBS?

 Guillain-Barré Syndrome (pronounced ghee-lan bar-ray) is a rare condition in which your immune system attacks your peripheral nervous system. The nerves in your peripheral nervous system connect your brain to the rest of your body and transmit signals to your muscles. The muscles won’t be able to respond to signals they receive from your brain if these nerves are damaged.
 The exact cause of Guillain-Barre is unknown, but it often occurs after a viral or bacterial infection.
 There’s no cure for Guillain-Barre, but most people eventually make a full recovery. Recovery can be slow, lasting anywhere from several weeks to several years.

Jack has always heard the phrase "Ohhhh, a wee girl would be glad of that hair!" So after hearing of The Little Princess Trust, he thought, well a wee girl can have it! Jack started to grow his hair in 2014 with the aim of having it grow so long it could be made into a wig for a little girl who'd lost her hair due to cancer. It's not been an easy job for a blue eyed boy! Jack's been called a girl - DAILY, he's endured the repetitive dose of "ohh, when are you going to get that hair cut"..., he's been teased by other children (who don't know him) for having long blonde hair, he's been mistaken for his sister Emily and he's even been asked to leave the boys toilets because he's been mistaken for a girl. That one, really, really hurt. But through out, he has kept his resolve and his humour to continue with his mission to have his hair go to good use and donate it to a child who really needs it while raising funds for GBS / his brave cousin Kieran.

Jack's golden locks will soon be on their way to be transformed and Jack will have his 'boy' status back again in a flash. But for people - infants, children, adults and elderly who have been affected by GBS the road to recovery is a difficult and unique path. One that is also not fully understood and needs many helping hands of support to find the path to recovery.

That's why it's so important to the boys, to raise awareness of this syndrome and to help those effected as Kieran. Thank you for your support.

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