Two year old Jack Lenehan has an extremely rare condition known as Spinal Muscular Atrophy Type 2 (SMA).
SMA is a disease that attacks the Survival Motor Neurone Gene. This gene ensures the survival of the nerves that control gross motor function. This disease is progressive, which means that as Jack grows older his symptoms will become more severe and life threatening.
Jack has the only known case of SMA type 2 on the Gold Coast.
Jacks disease prohibits him from developing the gross motor skills that other children develop normally. All Jack‘s major muscles that are involved in normal growth are weak due to the degeneration of the nerve which triggers the muscle.
Due to this degeneration Jack will never have the ability to be mobile and play like a normal child. This includes activities and development such as crawling, walking, and moving his head upwards. SMA also affects Jacks breathing and ability to swallow, meaning he will often be subject to chest infections and will eventually need aids to help him breathe and swallow food. Even though he is very intellectually capable, Jack will need 24 hour assistance including daily physiotherapy and frequent hospital visits.
Jack‘s parents, Cassy and Joe, need the support of the Gold Coast Community to help fund the expensive and necessary equipment that Jack will require in order to give him the best chance at optimal health and quality of life.
Firstly like to say that we feel very honoured to have had a plight (Appeal) to be run by the team at Dream Workers for our son Jack. Deb Smith you are an angel from up above and so are all the team at Dream Workers, you are all amazing for making that difference. I can recall the first conversation I had with Deb and how she had heard the story of our legacy and wanted to learn more about Jack. I could here the excitement and interest in her voice knowing that we were about to start another great new Journey of hope and life changing experiences to enhance Jack's life quality.
Since our diagnosis in mid November 2009, Jack's health is going from strength to strength. We started him on a drug called Epilium we have found that he know has steady range of movement, although this drug will never make him walk, it helps the nerves to Plato instead of pure degeneration at its quickest. Because of this drug Jack is able to last longer periods being awake, is capable of playing with toys, sitting up for periods at a time, half rolling, finger feeding with some foods, turn the pages on a book and he can also use a joysticks on games and control his manual wheelchair.
In March, Jack had his first round of sleep study tests held at the Mater Hospital Brisbane. This was very scary to watch, Jack was such a patient little man, on this particular test, they hook Jack up to various brain waves, breathing machines and watch the pattern of his breathing through out his sleep, all together I think there were approx 40 different leads hooked up to Jack in some areas they had to glue it to him so that he could not pull the leads off. This test lasted for 12hrs. The results came back to show that Jack's lungs are completely strong and healthy and had the function of a healthy 2 year old. The registers made note of how careful we had to be coming into the colder months making sure he wasn't always in the cold, rugged up and trying to stay in as much as possible to stay clear of the nasty, colds, viruses and flu, a simple flu can lead to very severe pneumonia and this is one condition we need to prevent as Jack has a weakness of the lungs in which he can not fight it like a child with strong lungs. Fingers crossed we are almost through winter, hoping that we don't need to go back due to infection for his next sleep study until November the end of this year 2010.
A little bit on house and improving life as it has been to ensure Jack has the best quality of life. Since November last year we have brain stormed fundraisers, sent many submissions and also had donations in to help us give Jack the quality he deserves, we have come soooooo far yet have sooooo far to go to have a comfortable effortless environment for Jack and also for myself as his carer. Might I quickly add, Jack is 2.5yrs at the moment and almost my height! We have had 20m3 of concrete laid around the house to make it wheelchair accessible in all areas, built ramps for his main entry to the split levels, before this we had to earth move the whole backyard to make flat ground for Jack to have these entry points in his chair, just recently we finally raised just over $26,000 towards his power wheelchair which we will upload some pictures for you. We have also just renovated the bathroom so it is wheelchair accessible and comfortably fits Jack’s seating assistants to make his life and caring for him easier. We are very thankful for the help many friends, family and individuals, you all know who you are, as for Dream Workers you are helping us to achieve a life we could only dream for.
A special thank you to Beaumont Tiles and the team for donating the tiles for Jack's accessible bathroom, his brand new sensor taps make him be able to feel independent. A & L Windows for your donation of the sliding doors to make Jack's entry so much easier, this is going to save time and enable him to do it all by himself. Newstart Homes for all your help and guidance. Corinthian Doors for making a cleared size front door that will make his entrance so much easier once again.
We have come so far, yet have so much to do and would value your ideas, input, expertise and guidance, whether it be labour or expertise. We still need a lot of help around the house on various aspects to get everything compatible for Jack, we are so very thankful of your donations, sometimes thank you never seems quite enough lately, we are so grateful for everything achieved thus far and just a note before I leave. "Dream Workers" have been fantastic and a special thank you to Elaine Mebberson from Newstart Homes you too are a Dream Worker.
We look forward to sharing our journey with you and hope that you too feel every emotion, Jack is such a beautiful, loving, quick witted boy to be around everyday, he really deserves nothing but the best and together we can build the best life for him xox.
Until our next chat hugs to all, much love and light,
Jack, Joe and Cassy Lenehan.
Thank you to the following businesses and people that have generously supported Jack:
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