OUR HERO’S WILLIAM AND JAMES JOURNEY WITH DUCHENNE MUSCULAR DYSTROPHY

01 APRIL 2022

Firstly, George and I would like to thank each and every donor, who have helped us to help our heroes!

To date your generosity has allowed us to re-model the boys bathroom making it more accessible for them. We have also paid some of the many medical bills which arrive with persistent regularity. One such bill being for the ongoing need for new splints as our boys grow they need new splints at least twice a year, which Medical aid does not cover.
Nine years ago we were blessed with triplets 2 gorgeous boys and a beautiful daughter, that in itself was huge for two young people to deal with. While we appreciate that there are many families with a special needs child, We have two boys with this cruel, fatal and incurable (as yet) disease.

We also have to take special care not to neglect our daughter, as our boys need so much attention. Thank goodness she is very compassionate and loves her "boys".

In November last year William complained of chest pains and was referred to hospital under the care of a pediatric cardiologist, where is was found that he has developed cardiomyopathy. He is now on more medication and has to see the cardiologist every 6 months neither his medication or the specialist visits are covered by Medical aid. Two weeks ago he saw and Optician and was diagnosed with extremely poor eyesight, he now looks very professional in his new specs! This was also not covered by medical aid.

Our Heroes currently attend hydrotherapy once a week with a biokineticist, ideally this should be twice a week, but as this is not covered by medical aid, we are forced to limit this to once a week.

We travel to Cape Town from Port Elizabeth annually to be seen by a multi-disciplinary team headed by Professor J Wilmshurst, where they are assessed for lung function and any other medical conditions which may have arisen. This trip is undertaken by car, (our current car being a VW Polo), this makes for a cramped, and tiring trip for all. Once wheelchairs and luggage and other necessary medical needs are packed there is very little room for our three children. We would love to fly them to Cape Town, but this is beyond our reach currently.

We are blessed in that the wheelchairs we have are donated, but are not fit for purpose, each individual needs to be properly fitted, so as to provide the necessary support. Medical Aid again does not cover much when it comes to Duchenne Muscular Dystrophy. We have also been advised about the importance of a wheelchair which enables the user to be upright from time to time so as to assist with circulation, relief of bowels and breathing. This would be wonderful for our Heroes, but it is something we cannot afford at this stage.

Our other major expenses annually are bone density scans, medication, supplements. They will also need to see a Pulmonologist, Opthalmologist, Endocrinologist in the near future.

Our wish list at this stage seems to be never ending. At some stage we will need to re-model our home to accommodate our boys needs. Special beds and mattresses, hoists for lifting in and out of bed into wheelchairs, (William is currently proving to be a back breaker as lifting him requires super human strength). Other needs will include bi-pap machines, and the ever increasing medicines! We need to look at a new motor vehicle, which can accommodate wheelchairs and ramps so that we do not need to lift our boys in and out.

With enough funding we would like to see to the needs of our boys as well s start an N.P.O. to assist all children with special needs in our community. This would also grant me the opportunity of being at home with my boys, while still being a working mom.

We are teaching our boys to support and be aware of other special needs by participating in the Big Walk for Cancer!

17 January 2021 UPDATE:

We would like to once again thank all those who have generously given to the fund thus far, and especially those who have donated recently. All your contributions will help with the boys ongoing care and treatment immeasurably.

William's condition deteriorated significantly during 2020. He currently crawls around most of the time as it is very difficult for him to walk. We encourage him to walk as often as possible with his K-walker which we received in October 2020. He also makes use of a wheel chair kindly lent to us from his school until we acquire one for him. It has also become easier for him to shower, so we have upgraded it with an extension hose and nozzle for easier showering while he sits on a plastic chair.

James' condition thankfully hasn't deteriorated as quickly as William's, however he has started to struggle walking longer distances and tires quickly. It has also become easier for him to shower in a manner similar to William.

Both boys still require splints for their lower legs, William both day and night.

We have organised hydro-therapy for the boys and this fund will be used for that, as well as medication and doctor's visits in the future.

As always, your help means more to us than you know and we are forever grateful. Please continue to share our story as every bit of help is appreciated more than words can express and helps us as parents with improving their quality of life. Thank you!

George & Jacquie Chapman

ARCHIVE:

George and I would like to THANK all who have donated so generously to our boys so far, we are truly grateful and overwhelmed by your response in helping James and William. We have been able to organise a K-walker for William and he will be measured at school tomorrow, 24 August, for it. Your donations will also aid us in settling some medical bills for our boys.

Once again George and myself wish to express our deepest thanks and hope that you will continue to support us and share this campaign both far and wide. We will keep posting updates to let you know how James and William are benefiting from your generosity

(For more information see our original post below):

On 20 March 2013, I gave birth to Triplets, two little boys and a little girl. In 2015 my two boys, William and James were diagnosed with Duchenne Muscular Dystrophy. There is no known cure and the boys are facing many mobility challenges at this stage. They are 7 years old now and require leg splints at least once a year depending on their growth. Medical aid does not cover any of these and the cost per boy is between R3 000.00 and R4 000.00 per child. We also have to visit Red Cross Childrens hospital once a year to assess their ongoing needs and therapies. It has now become essential at this stage for William to use a K-walker as he is very unbalanced and spends most of his time on the floor. At a later stage we will need to purchase a bath lift, wheelchairs and many other appliances to keep our boys healthy. Due to all the medical costs, it has become necessary for us to appeal to the greater public for assistance. We would like to give our boys the opportunity to develop and thrive and cannot do this without help. They are currently at Cape Recife school, where they receive various therapies such as physio, occupational and speech!