Website and Blog for the Sam McMahon Trust

There are numerous parenting books available for parents offering advice on how to best care for their children. However parenting a child with a chronic illness poses additional challenges and the need for greater support. The demands of everyday day life are complicated and pushed to the extreme with the added pressure of medical appointments, treatments and procedures.

In Extreme Parenting, author Sharon Dempsey, writing from her own experience with her son Owen who was ill for several years and eventually died at home, gives an insight into the world of chronic illness and the effect on parents, siblings and extended family members. She defines chronic illness as treateable or manageable but not curable.  She acknowledges the importance of the parents ability to cope and the impact of their care giving on the wellbeing of the child.

Extreme Parenting does not represent the experience of parents who have children with Friedreich’s Ataxia but offers advice and reassurance. Dempsey emphasises the need for good and effective channels of communication.  She provides practical advice on issues such as coping with hospitals and treatments, advocacy, communicating with health care professionals and tips for family life.

A difficult but rewarding and inspiring read.

As 2011 draws to a close and 2012 is only hours way, we look back on what has been a very busy year for us.

There were many high points including our visit to see Dr Lynch at CHOP, in Philadelphia at Easter, the Mum’s Lunch which took place in June, the King of Greystones Triathlon in August and the overwhelming response to the Christmas cards sold in aid of FARA Ireland.

On a personal note much of our energy this year was spent on making plans for the future. Sam now has an accessible bedroom and bathroom downstairs. The upheaval of the building work meant that we could not hold the Open Garden event, however plans are under way for the 2012 opening and we expect to confirm a date in June in the coming weeks.

We appreciate the kindness and dedication of those who continue to support the Sam McMahon Trust, those who undertake fundraising, the Mini Marathon, the Dublin City Marathon, those who give their time and enery to  help us, those special people who work behind the scenes and say nothing. To our families and friends who are there to support us along the road that we wish we didn’t have to travel. We thank each and every one of you!

We are looking forward to 2012 and to meeting with you along the way.

Over the past number of months several people have approached us asking about the services that are provided for Sam. That got us thinking. After consulting with other families it seems that the physical therapy services for people with Friedreich’s Ataxia in Ireland are random and somewhat haphazard.

Some people have regular physiotherapy, others have hydrotherapy. Some get nothing at all. Why is that? How could people with the same condition get different services or none at all? We know that the disease does different things but all too often the results are the same.

We decided to create a survey. If you are the parent of a child or young adult with FA and live in Ireland, would you fill it in? Follow the link here and then submit.

Armed with the results we may be in a position to ask for better services for those with FA!

This year we are working with FARA Ireland to raise money so that we can find a cure for Friedreich’s Ataxia. They have fabulous Christmas Cards for sale. There are some many designs that we can’t decide which ones we like best.

Have a look on our shop page and see for yourself.

September 25th is International Ataxia Awareness Day.

We would like to take this opportunity to thank all of those who work tirelessly to raise awareness about FA.

To the specialists, scientists and researchers who have dedicated their efforts to finding a cure, we think you are GREAT!

Details about the 4th Friedreich’s Ataxia Symposium have just been released. The conference will take place on Saturday October 8th at the Crowne Plaza Valley Forge located in King of Prussia PA.

Presentations will include information about Neurological Features of FA, Diabetes, Biochemical Mechanisms and Therapeutic Pathways. There will also be presentations on current research and a Q & A session with the Research Panel.

For more details about the Symposium, information about the hotel and the relevant links for registration, click here.

It’s hard to believe that this will be our 4th year attending this symposium and we wouldn’t miss it for the world. We are looking forward to meeting all of the people who have now become a very important part of our extended family!

A number of people have contacted us recently to ask us about visiting Philadelphia.

Preparing to visit a doctor can be stressful but having to book airline tickets and find the right hotel, we that’s another story. We are not experts but we have made the trip on several occasions now. So here is what we’ve learned.

US Airways fly direct from Dublin to Philadelphia. The flight from Dublin to Philadelphia takes about 7 hours 40 minutes and the return trip takes an hour less, taking 6 hours 40 minutes.

We have always taken a taxi from the airport to our hotel. It costs about $30 including a tip. The taxi service that serves Philadelphia is reliable and there are plenty of them.

There is a wide variety of hotels to serve all needs and pockets in Philadelphia. We have stayed in the Downtown Marriott and the DoubleTree. Both hotels are family friendly and have accessible rooms. Both hotels are very central and located near City Hall. When you are looking your hotel remember that generally prices are charged per room and that there are taxes due on top of that tarrif. If you are visiting the Children’s Hospital of Philadelphia (CHOP) then it would be best to take a taxi from outside your hotel to the hospital.

Philadelphia is a relatively small city. There are plenty of cafes and restaurants. Rittenhouse Square boasts a superb atmosphere with cafes overlooking the little park. The Eastern State Penitentiary with  Al Capone’s cell and Death Row, is well worth a visit. For a little ‘retail therapy’ there are several shops in central Philadephia. The Apple Store, Macys, Banana Republic to name but a few. If you require serious shopping then a trip to the King of Prussia Mall will not disappoint. The only drawback is that it’s about 45 minutes outside Phladelphia. For those interested in a little history then a trip to the Liberty Bell Centre will entertain. Finally, it would be a pity to visit Philadelphia and not to run up the steps of the Musuem of Art, just a Rocky did in the movie. There’s also a statue of Rocky – the perfect photo opportunity!

Let us know how you get on. We can add you experiences to what we have learned!

The 10th King of Greystones Triathlon was a great success! With over 140 participants the event was well supported and a hard fought contest. In the end, Neil O’Grady and Rebecca Harris were named King and Queen of Greystones respectively. Congratulations to all who took part.

Great thanks are due to all of those who gave up their time on Saturday to ensure that everything would go according to plan, we appreciate your help and kindness.

We would also like to acknowledge the work and dedication of the organising committee. An event like the Triathlon requires a huge amount of planning and preparation. Many people commented on the fun atmosphere and the welcome extended by the locals in Greystones.

We hope that you enjoyed the day.

This year the 10th King of Greystones Triathlon takes place on Saturday August 6th. At present quite a few individuals and teams have registered to take part. If you have not registered then there is still time to do so. You can contact the organisers here.

To celebrate the 10th anniversary there will be spot prizes for competitors and as well as prizes for the male and female winners.

The Sam McMahon Trust will receive part of the funds rasied and we are very grateful to the committee for thinking of us. We would like to thank all of those who volunteer before and during the event and to those who are taking part we wish you well.

We will be keeping an eye out for Cormac McKenna, Larry Lawless and Nat Duffy. They can talk the talk but where will they finish…..

We were overwhelmed to hear that Susan O’Halloran was taking part in the 2011 Women’s Mini Marathon and raising funds for the Sam McMahon Trust. We very much appreciate Susan’s thoughtfulness and generosity.

We would also like to acknowledge the unrelenting support from the staff at Coláiste Éanna. Your quiet kindness has not gone unnoticed.