As promised we will be having more and more guest posts from other Mums and Dads all in different situations, because let’s face it, no two children or parents are the same. We all have so much going on in our lives and we get caught up in that. We forget to look at the bigger picture. I became like this over Addison’s sleep and thought my situation was just a nightmare and forgot that there are others out there doing it tough too.
After meeting Cassy, Jack’s Mum, for the first time last year…I walked away feeling like such a jerk (to put it bluntly). I sat there complaining about how terrible Addi’s sleep had been only to find out her full story (which of course made me so greatful for the health of my little boy). Jack was born with a rare disease called Spinal Muscular Atrophy (SMA) (type 2). SMA is a disease that attacks the Survival Motor Neuron 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.
This completely uplifting woman had been through what most of us would struggle to imagine, her world had been turned up side down and yet here she was still with a great big, beautiful smile on her face!!
The Lenehan’s are an amazing family, here is there story told by Cassy Lenehan:
An Ongoing Journey, Our story of Life and Now, Love the Lenehans xoxox
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 an oversized 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 Pediatrician 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 Pediatrician, 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 due 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 see a 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 4 year old getting more and more witty every day 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…. He loves lady gaga and the new Autodance.
As to date, we have had a few colds and infections with Jack, thankfully he has passed these. 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 in his heated pool, 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 few years has been hectic holding fundraisers and having house renovations done. We truly have been blessed with much help from our community of life long family and friends, organizations running appeals for Jack, from this our home is now wheelchair accessible. Jack can play with the toys from his shelves, wash his hands, swim freely, run around the whole house on the concrete with the dogs, open the gate to go out on the road and see his friends; most of all go wherever he wants to without limitations.
Jack has a Permobil Powered wheelchair and we have had our car converted to suit Jack’s wheelchair in which 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.
Next year Jack will be going to school….. OMG Prep. He is so excited as are we are for him. Our little man is living life as good as can be, next week we have a few tests as he is hips are out 50%, meaning they are dislodged when he is sitting and they sit back in place when he is laying down, a little frog liked. We decided not to give him a full hip reconstruction as for 1, he would of had 60% chance of coming out of the op and two, it hurts to say but why do such a big op if our little man will never walk.
Most nights he rolls from 15 to 30 times on a bad night after pain relief and 4 hours sleep the turmoil of pain begins, even though it seems hard at the time to get rid of the cramps and pain, through the tiredness in the morning you hear him wake, mum, mum I’m hungry I want to get up, the rest of the morning and day he shows no sign of pain he endured the night before, this alone builds strength to get past the night before and what this disease brings to his life, over and over again …
In a couple of weeks we are yet to endure more tests and sleep study’s as in a nutshell this disease is now taking over his spine, which makes many problems for his lungs….. The pain relief is working for now we just wish for a miracle to slow this disease down….
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 apnea 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.
Once again we thank our friends, our family our fans and followers for making us and our life complete, without you we would be lost. Love Cassy Lenehan, Joey Lenehan and Jack Lenehan xox
Since this was written, Jack started school and is loving it!! The cheeky little monkey is now five and makes every day special, laughing all the time…even on the cloudiest of days.
I can’t begin to imagine the struggles that they face each day but somehow they power on. Cassy is one of the most inspirational mums I have ever met and such a beautiful person. You can’t help but smile in her presence. Thank you so much to Cassy for sharing her story.
Here is Jack’s website if you would like to pop over and take a look, and you can also find him on Facebook. For more information about SMA check out the Spinal Muscular Atrophy Association of Australia.
