Powerwheelchair for Milosz

Milosz lives with his family in Market Harborough, Leicestershire and is diagnosed with X-linked myotubular myopathy. Over the last six months Milosz’s needs have changed and he now requires a specialised powered wheelchair.

Milosz

Milosz’s manual wheelchair has become too small to him and the back support is no longer efficient. In addition, Milosz had developed mild scoliosis which requires specialised back support. And while Milosz can self propel his manual wheelchair indoors, he relies on people to push him on longer journeys outdoors. As a pre teenage boy, Milosz craves some freedom and a powered wheelchair would enable him to be more independent.

Milosz’s family began the process of arranging for a power wheelchair in September 2019, applying for one through a charity but due to coronavirus, the charity were unable to fund all of it and organising fundraising events at this time is difficult, so the family are now aiming to raise the £6,700 needed themselves, before Milosz starts secondary school in September.

Stanley

Milosz’s friend Stanley is helping to fundraise also, by running a marathon. Starting on 26 May Stanley began running a mile every day for 26 days and is aiming to raise £2,000.

Could help fund this essential piece of equipment for Milosz? Please visit the websites below to learn more and donate.

Brewing for Beggs

 

Erin and Mark Ward’s son Will is diagnosed with myotubular myopathy. In 2016 they told The Information Point about the fundraising event ‘Brewing for Beggs’ which raised money for the Beggs Laboratory Congenital Myopathy Research Fund at Boston Children’s Hospital. 

Brewing for Beggs.

For the past 11 years, our son Will has partnered with Boston Marathon runner Kate Maul, in the Miles for Miracles program through Boston Children’s Hospital. For several years, Kate, her husband Tim Maul and fellow marathon runner and friend, Gretchen Wilson, have specifically designated their marathon fundraising to the Beggs Lab in honor of Will.

This year, they held their second special fundraising event called ‘Brewing for Beggs’ which took place on April 3 2016 at Hopsters in Newton, MA. Guests that attended got to experience making their own brew, drinking some brew and learning about the important work happening at the Beggs Lab. Dr. Alan Beggs and Casie Genetti, of the Beggs Lab, attended the event. It was a fantastic event for a great cause.

Left to right: Gretchen Wilson, Kate Maul, Alan Beggs, Casie Genetti and Will Ward.

Through this event and additional fundraising, Kate, Gretchen, and Tim, all ran the 2016 Boston Marathon and collectively raised over $10,000 towards the Congenital Myopathy Research Fund for the Beggs Lab. We are grateful for their efforts for the MTM-CNM community on behalf of their partnership with Will.

Further information

Dublin marathon

This story first appeared in the Information Point newsletter Our World in 2012 when Wayne Fitzgerald told us about running the Dublin marathon for his friends Marie and John, to raise funds for The Myotubular Trust. 

Marie and John Loughlin live in Galway, Ireland and have lost four sons to Myotubular Myopathy. Earlier this year their friend Wayne Fitzgerald decided to run the Dublin Marathon to raise funds for the Myotubular Trust. Below Wayne writes about training and what it meant to take part in the event.

Training for this marathon began some time back, when the idea of completing it was planted in my head by a friend who also wanted to run it but decided prior to our planned start date against the idea. I on the other hand felt as I had asked a friend to design a running programme for me, that I would continue with the plan.

As a member of the Irish Defence Forces I have always kept a certain level of fitness. Prior to training for the marathon I tried to complete three weight training sessions and two to three runs a week. Once the marathon training kicked in on July 4th I stopped training with weights and concentrated almost solely on running. The very rare time I did a weights session it was to complement my running by concentrating on leg muscles exercises with light weights.

My first run on July 4th was a four mile run leading up to eight miles on the first Sunday of a sixteen week programme. Each week was different with regards to distance and types of run. These varied from three miles ‘Hard’, to hill sessions, interval training, fartlek and of course endurance runs with the shortest been eight and the longest pre marathon run of twenty two miles. During these runs I would rehearse my eating and drinking planned for the marathon day. By doing this I learned what foods I could eat without fear of my body rejecting them on the day. It also afforded me an opportunity to gauge at what stage I would suffer most and how to minimise this effect. I found later in the training programme, towards weeks 12 – 16 , that using ice baths and very often the sea is a brilliant form of recovery. After long endurance runs or the end of a tough week, ten minutes in the Atlantic Ocean, while often freezing, aided my recovery substantially. I also had three physiotherapy sessions during the training that ensured I was in perfect shape for the marathon.

The prospect of running for X Linked myotubular myopathy entered my mind long before I approached John and Marie and asked for their permission. I, like many of their friends was aware of the illness and the pain it had caused to them and their families. John and Marie have always been very open about their sons and are willing to speak of the illness. The fear for me was I was afraid of upsetting them or opening old wounds. Then one day at work, a friend asked me was I running the marathon for any group. I replied no and he said ‘why don’t you run it for Locky’s boys’. So I went to John (aka Locky) and asked him was it ok for me to do it. John of course being the type of man he is, answered absolutely.

With John and Marie on board, the training, despite entering a tough phase now had a real purpose, something greater than running a marathon. We as one, were going to spread awareness of this illness. Plus for me, when the endurance runs got tough, I had added motivation to complete them.

As part of our plan, we raised sponsorship for X Linked myotubular myopathy but the greatest result we got from this was people asking ‘what’s that’. The run provided us with a platform to educate people and spread awareness of this illness. It was an opportunity to spread word of websites, contact groups and other people who had been through this and could offer support to people in the event it occurred in their home.

After 16 weeks of training, the day of the marathon had finally arrived. Standing at the start line waiting to go, a number of emotions ran through me. I was partly relieved to be standing there, proud to be running for the little men watching over me, nervous about the challenge ahead and apprehensive about the run.

My wife Lisa, who supported me all the way through the training, putting up with me coming in the door from work just to change into running gear and go back out the door, leaving training gear dotted round the house and my general absence, had traveled to Dublin with my girls Alayna and Emma to support me. I thought about them a lot on the start line and how lucky I am to have them and how grateful I am to them for being a source of motivation.

As the race began I ran at my pace. People have often got caught up in the moment and take off too fast causing severe problems later in the race. I found however by running some shorter races during my training; ignoring all the other runners and running as I had trained, that I felt strong as I passed each mile marker until around 23 or slightly after. By 20 I had hit my wall and began to feel tired. As I passed runners and others passed me, I noticed various groups and charities on the runner singlet’s and tshirts so I thought a lot about X Linked myotubular myopathy and John and Marie’s little boys.

By the time I had reached 25 miles I was really feeling pain and it was around then the race came back into Dublin City. I knew then not only would I finish the marathon but would do so under my planned time, without walking one step and would have helped raise awareness of X Linked myotubular myopathy. I thought of John and Marie’s’ little boys at this point and whispered thanks to them for watching over during the race.

Finishing the marathon while though a nice feeling, was never about me as an individual, it was about continuing through barriers to achieve a goal. Often in life there will be no goal, no end state but somewhere along the line a difference will have been made and that is what we did as a team by running the Dublin City marathon and raising awareness for X Linked myotubular myopathy.

The Wall: A Tale of two Americans and two Italians and Their 69 mile quest

This story first appeared in the Information Point newsletter Our World in 2012 when David Lewis told The Information about taking part in The Wall to raise fund for The Myotubular Trust. 

On the weekend of June 23rd, team Aquilam Quaerentes (David, Filippo, Guido and John) joined 700 other crazy people to run the Wall, a relay from Carlisle to Newcastle following the path of Hadrian’s Wall. It was rainy (a lot), muddy (even more) and hilly (too much) but it was also fun and the team raised £12k for the Myotubular Trust, completing the run in 12 hours 47 minutes and 15 seconds (8th Relay Team overall). Below, David writes about the experience.

Our first major obstacle turned out to be the drive from London to Carlisle which we had anticipated to be a leisurely 5 1/2 hour drive … 10 hours later we arrived in a drenched Carlisle having been buffeted by torrential rain and high winds and having been subjected to some of the finest traffic that England has to offer. After that drive, the Wall was going to be a snip.

After a good meal and a good night’s sleep, Filippo was raring to go the next morning. He arrived at historic Carlisle Castle for the 8am mass start in the driving rain. Because of the extent of the local flooding (remind me again why there was a hose pipe ban in England this summer) the organisers altered the route to make the running safer. Some 2 3/4 hours and 15 miles later, Filippo, having run through a rushing river and otherwise experiencing the wonders of the rolling hills of the Cumbrian countryside, limped across the line and touched in at Lanercost Priory, an Augustinian monastery founded in 1169, to hand the baton off to David.

Our team spent some time congratulating Filippo on making it and discussing his adventure before a very scared David took off for a short 17 mile uphill jaunt towards the Roman fort of Vindolanda. Although the run began in sunshine, it was fleeting and the weather returned to wet and windy. The scenery in the hills during this stage was generally masked by the rain clouds and in any case the runners spent most of the time staring at the ground to see whether the next step would be in water, mud or ‘slurry’. When the occasional walking rest was taken the scenery though did prove to be breathtaking (even through the rain clouds). 3 1/2 hours later David finally arrived at the near halfway point at the end of the first day to be whisked away by the team to their luxury Cumbrian hotel which was happily warm and dry.

The following morning it was time for John to hit the trails with a 13 mile run which began with a hill climb like no other. John, a very experienced distance runner, literally had to scramble up the hill on all fours grabbing tufts of long grass to get him to the top of the monster. After ‘the Hill’ John ran along a long, rain drenched plateau before descending into the market town of Hexham and the next handoff point along the banks of the rushing Tyne River.

After a little conversation about John’s 2 hour 20 minute run and ‘the Hill’ it was time for Guido to take up the baton for an ‘easy’ 17 mile segment following the course of the Tyne River. Guido ran as if he were a messenger sent by the Legion to deliver a message to Hadrian. He was so fast that the team didn’t even notice when 2 hours and 50 minutes later he arrived at Newburn/Tyne Riverside Country Park. After the 10 minute team natter about the run it was time for David and John (who felt as though he hadn’t had enough abuse that day) to run the final 7 miles into Newcastle. After a little more than a mile John decided that ‘the Hill’ had gotten the better of him and sent David on ahead to finish the race for the team.

A little less than an hour and several bridges later, David and his ‘Five Finger’ shoes crossed the Gateshead Millennium Bridge and the finish line bringing an end to 2 days and 69 miles of fun and camaraderie but leaving Aquilam Quaerentes with the daunting task of driving back to London.

Adam inspires triathletes

This story first appeared in the Information Point newsletter Our World in 2011. when Sarah Foye told The Information Point about completing her first triathlon.

I am a mother of a special needs child. My 10 year old son, Adam, has centronuclear myopathy. He struggles with fatigue every day. This story is about how Adam and loved ones inspired each other to improve our fitness for a cause.

I am now in my 40’s and my physique and my energy were slipping a little year after year. As many mom’s of special needs children know, sometimes our own health and medical needs get put on the back burner. Despite her own health issues, working full time and taking care of her two children, my sister, Stephanie, had finished several of the Danskin triathalons in Wisconsin with some of her friends. She kept encouraging me to try a triathalon for myself. I kept ignoring her suggestion since I am not much of an athlete. Well, I finally thought, ‘Why not give it a try? If Adam has the strength to make it through his day with tiredness, I can give this triathalon training a try too.’

So, I started to train very slowly beginning in January. I started a program called ‘Couch to 5K’. Using an app on my phone, this program helped me to build up very slowly into running. It uses a combination of running and walking to increase running skills little by little. This slow approach and simple method of using my smart phone really worked for me.

I slid very slowly into the racing scene. The first race I did was a gentle indoor triathalon at a local YMCA that focused on time, not performance. For example, it was a 15 minute swim in an indoor pool, a 30 minute ride on a stationary bike and 20 minutes on a treadmill. I thought, at least I have no way to crash on my bike with this plan seeing as it’s stuck to the floor. This was a great way to ease into the idea of a larger, outdoor triathalon. It was so cute to see my husband Patrick and Adam cheering me on holding up a sign in front of my treadmill at this event in March.

My next step was to participate in a triathalon relay, where multiple people work together to complete the swim, bike, run that’s required to complete a whole event. This would give me the some experience with an outdoor triathlon. I found a lovely partner with a longtime friend of the family in Adam’s youth mentor, Molly. Molly Smith has been a wonderful part of our family for about 8 years. Molly served as a mentor to Adam, starting when he was 2 1/2 years old. Molly went through a special training course offered through a local disabled advocacy group called Pathways. She has come on a regular basis since then. As a mentor, she served as a companion and playmate and offered me some respite. Molly learned about Adam’s special health needs and was able to lend a hand with these tasks.

As Molly got older, she transitioned into being a paid helper for Adam. She ‘shadowed’ our son at the local town summer camp. She was responsible for making sure he stayed safe, hydrated and did not get overly tired. She also helped with modifying activities that fit with his abilities. Molly also started doing some babysitting for us. This involved learning how to do many aspects of Adam’s special care including putting on his scoliosis brace, using his feeding tube and putting him on his ventilator at bedtime. Molly showed great skill and responsibility with these tasks. Molly is very smart, reliable and has good judgment but best of all, she is just plain lovable.

On July 17 Molly and I, joined up to form ‘Adam’s Angels’ to compete as a relay team in a local sprint triathlon and to raise funds for muscle disease research. I swam the 1/2 mile and biked 10 miles and Molly completed the 5K run. We had loads of fun and raised over $400 for the Joshua Frase Foundation. This increased my confidence about doing a whole triathalon by myself.

Soon after that, Stephanie raced in Wisconsin in August this year. I wasn’t able to attend or compete with her because it was the same weekend that we were sending Adam to MDA camp.

During her race, Stephanie wore the t-shirt she got at the MTM-CNM family conference in Minnesota. She said she chose the shirt because as she raced she thought about Adam and others like him to give her energy throughout the event.

On September 11, I participated in the Danskin Women’s Triathalon in Sandy Hook, NJ (with New York City visible in the distance). It was the culmination of years of encouragement from my sister, inspiration from Adam and confidence from the relay that I did with Molly. My sister flew in from Chicago to cheer me on. I successfully completed the 1/2 mile ocean swim, the 10 mile bike ride and the 5K in 2 hours and 10 minutes with my sister Stephanie cheering me on the whole way. Crossing the finish line was an emotional triumph.

With Molly as a teammate and Adam and Stephanie as my inspiration the triathalon was a huge success. My son taught me how to keep going in the face of fatigue. My sister taught me that it’s important for moms to make time to do things that will make them healthy and feel great about themselves. I made fitness gains but more importantly, I feel proud and strong. Before my race even began, I had already won. Thank you Steph, Molly and Adam. Now, if your reading this and thinking to yourself, ‘I’m not much of an athlete … ‘ consider giving it a try.