They Never Choose to Walk

We now have over 50 Teams talking part in the Hampden Kiltwalk, which is nearly NEXT WEEK!! Gulp.

These figures make it abundantly clear "we got it right" as the team concept is one of the things that makes The Kiltwalk unique by offering fundraisers the ability to take part in an organised event where not only do Scotland's Kids benefit, their chosen Children's Charity, or Children's cause, also benefits, which is great.

Where possible, we try and find out what motivates a team to take part and as you would probably expect, the majority don't 'choose' to walk. Don't get me wrong, they would in normal circumstances, however all too often they're walking to raise money for a child who is ill, in need of support or sadly like "Wee Jack's Tartan Team", in memory of a child they have lost.

"Wee Jack" is Jack Alexander MacPherson who was born on the 28th July 2006 and died 3 months before his second birthday in April 2008. Jack died of an extremely rare condition called Globoid Cell Leukodystrophy, more commonly known as Krabbe Disease.

Children who inherit the disorder lack GALC, an important enzyme needed for the production of normal myelin in the central and peripheral nervous systems.
When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.

Progression of the disorder is rapid and death occurs in early childhood.

During Jack's short life the MacPherson family received valuable support from CHAS and were regular visitors to Robin House, which was a lovely environment for them in such tragic circumstances.

So when Melanie learned The Kiltwalk supported CHAS, she did what she does best and set about organising Wee Jack's Tartan Team, which at 28 in number, is one of the largest teams taking part in next weeks Kiltwalk.

When Melanie isn't training for the Kiltwalk, which by her own admission is not a lot, she helps run SavebabiesUK, a support group for families affected by Krabbes where she is currently supporting a wee girl from a local family who has the disease. So it's no wonder she doesn't have time to train. Therfore if you see her limping her way to the finish line, give her the helping hand she extends to others.

Krabbe's Disease has no effective cure when detected too late, however since Jack's death, Melanie found out that in the USA they have introduced Krabbe's Disease to their newborn screening program. This means that if children are diagnosed at birth, before the disease has progressed and any damage done, they may be suitable for a life saving bone marrow or stem cell transplant.

This has proven to be an effective treatment for Krabbe's Disease and something Melanie would like to see introduced in the UK, which is why she is happy for us to tell her story and hopefully raise some awareness as the key is early detection, and newborn screening would provide this.

Please read Melanie's story below.

"Jack was a delightful baby, who was adored by all. We loved watching him change from a newborn into an inquisitive baby and he seemed to have no trouble reaching all the expected milestones. We eagerly awaited his next achievements, it would not be long before he would sit up unaided, crawl, get that important first tooth.

I returned to work in January 2007 when he was almost 6 months old, I was looking forward to getting back to the job I loved and settling in to our new routine.

It was a few weeks later than our world began to fall apart.

We noticed Jack was no longer reaching out for his toys. He particularly loved his rattles and would chew on them all day long, now he simply didn't seem interested. We also noticed that at bath time or when he was getting a nappy change his legs did not kick about like they used to. We were confused as he seemed well and was still smiling and laughing. Over the next few days we noticed that his arms and legs would go rigid for seconds at a time and that his head control was not as it should be. The next day he started to refuse his milk and solids and became very irritable.

We took him to our doctor a few times and a few possibilities were suggested. After another week of no improvement and more regression we decided to take him to our local children's hospital to be assessed by a paediatrician. While being evaluated Jack started to have seizures and within 24 hours our little boy had become very sick indeed.

Almost straight away the doctors referred to Jack as complex, complicated, most unusual. They prepared us for the worst but we were still devastated when the diagnosis came a few weeks later. Krabbe's Disease, a rare degenerative neurological condition. We were told there is no cure or treatment and average life expectancy is 14 months with most infants not reaching their 2nd birthday. Children lose all movement, speech, smile, eyesight, hearing, ability to swallow. Jack was showing all these symptoms very rapidly therefore we had to quickly adapt to caring for a terminally ill child.

Jack was only 8 months and we were facing the prospect of only having him with us for another few months, our world fell apart, our friends and family were devastated, how can this happen to such a wonderful child.

We were determined that Jack would come home to us, and receive the best care possible. From the beginning we have tried to be as positive and optimistic as possible, learning so much about special children and ourselves along the way. We soon adapted to his care needs, we mastered giving him his milk and medicines via a feeding tube, learning physiotherapy skills and ensure he had all the necessary equipment to make him as comfortable as possible.

Jack sadly lost his fight to this cruel disease on April 29th 2008. He was 21 months old. Our lives will never be the same again"

Keep doing what you're doing Melanie, you're a special lady.