SMA Australia


Phone: (03) 9796 5744

story jack lenehanJack Lenehan’s Story

It was a shared moment of delight and excitement when Joe and I found we were pregnant with our first child, Jack, June 2007.

The pregnancy seemed normal as there were no complications and being the first child not knowing that anything should be different as from a normal pregnancy.
Jack was born on 7th April 2008. Jack was born with quite a over sized head. The first 4 months Jack seemed to have the fine motor skills and interact with everyone, stories free play enjoyed bath time and always smiley.

At about 6 months we agreed that we should see our GP and have him checked out as his gross motor skills, rolling, head control, leg control, lower back control and his weight bearing weren’t up to what they should have been for a 6month old, we felt something wasn’t right, at this stage Joe was working out of state so I booked him in to the GP and we got a referral to see a Paediatrician which we first got in around the 8month stage. This was when we were first in touch with the Bundall Outreach team for the Gold Hospital where we met a lovely team of therapists who started working with Jack on a weekly to fortnightly bases with his physiotherapy.

Our first visit to the Paediatrician, we were told Jack had low tone of the muscles as he was able to sit up and had ok head control, maybe this could be to such a large head? We were told to come back at 12months of age.

Our second visit round we were introduced to blood testing with Jack, there were a few neuromuscular conditions that had been explained and it was at this stage we had to go to seea Neurologist to find out the problem. October 26, 2009 we had our first appointment with the Neurologist in Brisbane, it was here that we really came down to realization that our now, quick witted, cheeky, inspirational little boy could defiantly have a rare condition called Spinal Muscular Atrophy type 2.

Just from our initial consultation we were told of a 90% answer what he thought Jack may be suffering from or shall I say the condition he may be diagnosed with.
November 13th, 2009 we had the call to come up to the Neurologists office to find the answers we were not wanting to here. It was on the November 16th, 2009 that Jack was diagnosed with SMA type 2.

Our hearts were shattered, our world turned upside down, though it was right here when we realized we needed to ensure a comfortable life for Jack, to make it as independent as possible with all the love in the world, to ensure his happiness and prevention of early deterioration and pain.

As of this day, we continued with Jack’s weekly daily physio of stretching and massage and weekly swimming. Early December we were passed onto Montrose Access Arundel team, who are a team of specialists that work with our family to ensure Jack’s has early implementation of postural supportive chairs, bathing chair, standing frame for the prevention of osteoporotic bones, joint contractures and scoliosis. Ensuring Jacks accessibility to our house is as comfortable, his day to day living easy for him.

Jack’s lives without limitations even though he has a physical disability he makes up for it in many other ways, he will always give it a go not matter how many times it takes him, jack is a problem solver who completely keeps us on our feet and our brains going 100 mile an hour, jack likes to live without fear, he is very clever, has the craziest sense of humour, enjoys to read, paint, draw, free play, play group, his friends, hooning around everywhere in his chair especially over the mud and bumps that’s his favourite, he is a water boy through and through loves the beach and the pool, his favourite show is the Australia’s funniest home video show, at the moment he is becoming the bossy 2.5 year old getting more and more witty everyday and has conquered the DSI Santa brought him for Christmas! He is our inspiration to living life without limits, there is no word such as “Can’t Do it” with our little Jacko he will always give it a try…

As to date, we haven’t had a bad flu or infection with Jack, his taste buds are quite infectious, he loves all kinds of foods but does however suffer from low tone when he is fatigued he can’t swallow properly and likes to save a little food on the inside of his cheek, we always check for this when he is fatigued. We started him on Epilium December 2009, we know it is not a cure and is working towards slowing the deterioration of his nerves, this working together with his daily physio, bi – weekly swimming and his standing frame daily, all these factors together are making a huge difference in Jacks head control, postural strength, fatiguing and most of all is giving him a better quality of life and experiences.

We make sure not to overdo it with him but rather find that happy medium; we don’t over use his postural seat’s, maintaining a healthy limit of relaxing time to sitting up.
As of August 2010 we now have a new neurologist and respiratory specialist from the Royal Children’s hospital Brisbane and are great full that we are lucky to be guided by Australia’s best.

It was early 2010 that we contacted SMA CEO Julie Cini to let her know of Jack’s diagnosis and to learn of what the Association is all about. Julie was fantastic is explaining the condition and putting us on the further specialists and also explained to us that if need be in need of assistance, how SMA Australia is alive to support the children and their families living day to day with this condition and to help find a cure.
The past year has been hectic holding fundraisers and having house renovations done. We truly have been blessed with much help from our community and organizations running appeals for Jack, from this our home is now wheelchair accessible.

Jack has a Permobil Powered wheelchair and we have had our car converted to suit Jack’s wheelchair in whom he calls “Weegie”. I CAN NOT explain in words how much extra enthusiasm this has brought to Jacks quality of life and shall I say his adrenaline loving personality. This year our legacy to help fund raise to find a cure for SMA we have been fundraising the last few months to get donation boxes into a variety of major banks and major shopping centres Gold Coast wide, we are working on it at the moment and if all goes well we should have the boxes out and fundraising by start of March, yayayayay! Together we can make a difference!

Even though it is a hard road and going to be an even harder Journey, we thank god for the beautiful man he has given us…. Some nights are a little horrid with sleep apnoea and needing to be rolled constantly, most days after a bad night you wonder how he gets through all this pain…. “Our Jack” is a special gift from god, here to teach us all that we should be great full for the life we lead and never take it for granted.

Enjoy every day and the precious time you have to make that difference to quality of life.

Take Care, Love and Light to all xox