Brionni's Walk From Falkirk to Alloa on 7th June 2000

The walk from Anita's viewpoint ...

In 15 years of The Jennifer Trust I have experienced many emotional and moving moments. Times spent with families with Type I SMA babies are particularly precious. During these years I have been overwhelmed at the strength, tenacity and bravery of so many families in the face of one of the biggest traumas you can face as a loving parent - the prospect of losing your much loved baby.

On Saturday 3rd June, I was privileged to be in Scotland to meet such a family - Tracey and Gareth Alexander and their beautiful baby, Brionni (aged 5 months, who has Type I SMA). Tracey and Gareth had decided to organise a sponsored walk with family and friends to raise much-needed funds for the Jennifer Trust. The Scottish national newspapers had got hold of the story and moved the hearts of the whole of Scotland.

Arriving in the Square in Falkirk where the walk was to begin, I was stunned. Over 200 people had joined together to walk for Brionni and her Mummy and Daddy. Many were wearing specially printed T-shirts emblazoned with the Jennifer Trust Logo on the front and on the back "Brionni's Walk for JTSMA." I was choked - people, T-shirts, collection buckets and boxes everywhere! Gareth gave a motivating rally to start and the great throng of people surged forward. Turning the corner, I saw a sea of people stepping out - the whole road was full and there in the midst was Brionni, being proudly pushed by her Grandparents.

Due to my naughty knees, I dropped out after a mile, but Mike, our new Fundraiser, was a man with a mission. Lynn Hamilton and her daughter Rachel then very kindly chauffeured me along the route, whilst her husband Craig and their son Mark participated in the rest of the 16+ mile walk. Lynn, Rachel and I went to the second pit stop - a pub near the Kincardine Bridge to await the arrival of the walkers. The regulars were all buzzing at the prospect of greeting the walkers. We saw Mike, Craig and Mark through and then continued to follow the route through Clackmannan towards Alloa - the final destination! Several miles into the journey, it became apparent that Mike had deviated from the designated route. I panicked! Our brand new Fundraiser was out alone in the Scottish countryside with no map and no water (and it was hot!). Search parties were despatched and we eventually found him - he'd taken the long way round to Alloa, but was hanging on in there, still striding out. Boy was I glad to find him! (So was everyone else.) I'd got out searching for him - I think they were thinking they'd be looking for this man all night and miss the wonderful reception planned for the end of the walk!

I returned to the hotel - Dun Mar House, which was the venue for the finish, to await the walkers. I was glad of the opportunity to talk to many of them and to thank them personally for their support of Brionni, Tracey and Gareth, and of the Jennifer Trust. Many of these people were total strangers to Brionni's family but had become involved having read the article in the paper. Sadly, Mike and I had to leave early to catch the train back to the Midlands. However, Craig and Lynn Hamilton were superb ambassadors for the Jennifer Trust and Craig made a very emotional speech on our behalf at the reception. Craig told everyone that I was 'gob-smacked' at the size, scale and slick organisation of the event - I truly was!

I have many precious memories of events and of people I have been involved with through the Jennifer Trust, and this particular day will rate amongst the very highest.

I had the privilege to spend a few precious moments with Brionni and her parents before the walk. It is the bravery and positivity of people like Tracey and Gareth that make me so proud to be Director of JTSMA. Nothing can hurt more than facing the loss of your beautiful baby and to do something as impressive as this for others who live with SMA is incredible. I have nothing but respect and admiration for the Alexanders and their very beautiful little girl, Brionni - they are truly an inspiration.

As for the Hamilton family, who themselves have lost two babies, Scott and Karen, to this condition. They carry out their role of Contact Family for Scotland with such empathy and compassion - I know their support of the Alexanders has had great impact. The role of our Contact Support Network is so vital to families across the UK and this physical effort by Craig and Mark clearly demonstrates their dedication, commitment and love.

As for Mike, Fundraiser Extraordinaire, he's a Man in a Million - to walk 20 miles in a 16-mile walk to show his personal support for this family's efforts is remarkable! (So were his blisters!) I am thrilled to have someone who has such commitment, calibre and belief in the importance of the Jennifer Trust on board (Next time though, I will personally make sure he has a map and knows where he is going!!).

The stars of the day though, were beautiful Brionni, Tracey and Gareth - her Mummy and Daddy. I understand that the event has raised in excess of £20,000! Our thanks go to all who participated and to all of the generous sponsors of the walk.

God bless, Brionni.

Love, Anita

... And from Mike's

On my journey by train to Glasgow, there was a feeling of excitement and anticipation. It was part of my philosophy that we should help each other through the difficult times in life and now I was going to realise that belief.

We were met by Craig and Mark Hamilton at Glasgow Central and were whisked off for an evening of Scottish hospitality. This was an ideal start in preparation for the walk. We ate, drank, played music, sang and listened to Mark's guitar playing. Finally, we were away to our beds, hopefully to get a good night's sleep in preparation for the walk. We departed from the Hamiltons, heading for Falkirk early morning. When we arrived at the Town Square, there was a steady build up of people and you could feel the atmosphere starting to build up. People were checking in and a long queue was starting to form. By this stage there was over 200 people preparing to start the walk.

Mark, Mike and Craig

I wanted to introduce myself to Tracey and Gareth Alexander and to get the opportunity of seeing Brionni before we set off. I was fortunate to be able to spend a few precious moments with Brionni. Being able to speak and pray for her filled me with a desire to succeed the long walk. At this stage I was anticipating it to be 12 miles in distance to the finish line. Little did I know that this fell somewhat short of the real distance of 16.8 miles.

We all set off in a great surge of enthusiasm and anticipation of what lay ahead of us. Immediately we were stopped by the local Police, who informed us that we must keep to the pavement. Eventually we were re-started in separate groups and sped off on our way to Alloa.

Approximately half way at a watering location, I discovered the walk was nearly 17 miles and not 12 miles. At this point I had to estimate my finish time as I was being collected for a speedy withdrawal to catch a train back home to the Midlands. This now required me to run part of the route, trying to make up time so I could rendezvous on time at the finish line.

By this time I was starting to feel some exhaustion in my body and my feet were also getting quite sore. During this period I had to summon up great reserves of motivation as I as now out on my own, having been unable to stop at the last two locations for refreshments. Each group of walkers were issued with a route map, which I unfortunately left behind with Craig and Mark when I took off running to make up time. I remember Anita calling to me, concerned that I wasn't able to stop for a drink and I should take a map of the route with me.

Being tired, disorientated and over-confident that I knew the final route, I again took off, following the sign posts to Alloa. Unfortunately, this added another 3 or 4 miles onto my journey to finish - which was the last thing I needed at this stage of the walk.

Now I really was digging deep down, searching for reserves of energy, followed by prayers that I would finish the walk in one piece. Unknown to me, Anita had sent out a search party and was extremely worried that I'd got lost (Oh she of little faith!). Finally, within sight of Alloa, I saw Anita running towards me with liquid supplies in her hand, looking extremely anxious. She was very worried, as the search for me on the route had drawn a blank. She was like an angel in disguise, giving me drink, support, encouragement, chastisement and appeared emotionally drained by her search for me.

At this point, she offered to drive me to the finish line as I'd already done the distance. However, I wasn't going to let a few extra miles off course stop me from walking to the finish line. But I was moved and impressed by her concern and support.

Now I was close to the finish line, weaving my way through Alloa town centre. I still had another mile to go to the finish. Legs, feet and body were now working on auto pilot and with only yards left, Anita and her in-laws, Mae and Ian, were waiting to congratulate my achievements.

It was over. I felt exhilarated, exhausted, euphoric and happy that there were people who supported my efforts there at the finish. We walked gently to the hotel and Ian ordered me what can only be described as a pint of bitter from the Gods. We sat and talked to people who had completed the walk, feeling proud that what we had achieved would make a difference to people's lives. Finally, we raced off to catch our train, saying farewell, giving handshakes, hugs and kisses, knowing that this had been a special day in all our lives.

© JTSMA June 2000