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Meet Jack Lenehan. This beautiful boy is 3 years old and since coming into the world has provided much joy and pleasure to everyone who meets him. Like every child, Jack is unique; but what is so special about Jack, is that he 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 is the only one of his age, of the very few known cases of SMA type 2 amongst the Gold Coast population. Jacks disease prohibits him from developing the gross motor skills that most children develop naturally. This means all the major muscles that are involved in normal growth are weak and have low tone as a result of a degeneration of the nerve which triggers the muscle. Due to this degeneration Jack will never have the ability to be mobile. This includes crawling, walking, rolling over or simply lying on his stomach and moving his head upwards. Worse still the condition also affects his breathing and ability to swallow correctly, meaning he will often be subject to chest infections and will eventually need aids to help him breathe and swallow food.
As time passes Jack will not be capable of completing simple physical tasks on his own. Even though he is very intellectually capable, Jack will need 24 hour assistance daily as he is unable to assit independantly, his routine includes a variety of postural supports, on going daily physiotherapy, hospital check ups and special needs equipment. Some of the major expenses include,
- - motorised wheelchair
- - standing and walking aids
- - specially designed postural chairs
- - bathing utilities
- - wheelchair accessible home
- - wheelchair accessible car
As you can see from the information already provided Jack will have a life unlike many others. Many parents in this situation may spend too much time dwelling on this very sad diagnosis and not on what Jack can provide the world through his bright spirit, sparkling personality and playful character. Luckily for Jack, he has the amazing support of his mum, dad, extended family and many special people who are endeavouring to ensure Jack’s quality of life is as comfortable as possible.
Jack is very quick witted, chatty and enjoys to paint, draw, read books, arts and crafts, singing, dancing in his wheelchair, the funniest home videos show, play group, swimming, hanging out with his friends and cousins, playing in the street with his neighbors, cruising around in the parks, shops and going to the movies. Jack's favorite movie is "Toy Story 3 and Spider Man. Jack laughs all the time and even on the cloudiest of days after having a bad night of pain he is always cheerful to be around, we are so proud of our little man and the strength he holds inside to endure this disease.
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