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 is the only boy of his age and only one of a handful of SMA type 2 cases known through out 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.
Jack's birthday party was an absolute blast with a lot of close friends and family attending and to Jack's surprise a visit from Buzz Lightyear! Although as soon as Buzz left the party Jack was asking where daddy was, its pretty hard to pull the wool over Jack's eyes.
Renovations around the house are almost coming to a close with the exception of the hydrotherapy pool that we're still trying to raise funds for. Jack's new standing frame is fantastic with a large tray and bowl which allows heaps of room to play with arts and crafts, reading books, playdoh and of course his racing cars. A big thanks goes out to John from Nerang Turf and the team at Technigro for helping us to finally get some turf down and the ongoing support that they provide.
Just recently Jack had another sleep s
tudy at the Mater Hospital which went very well returning some very positive results. Also at the Mater Hospital we attended an appointment with the spinal specialist over some concerns with Jack's spinal deterioration which luckily has not progressed as severely as first thought. This means no drastic measures need to be taken at the present time but rather to sit tight and monitor every 3 months. This news was very relieving to us but on a bad note the x-rays revealed his hips aren't in very good shape at all and will probably need to be operated on to re-align his femur with the socket joint of his hip on both sides. Another appoinment with a different surgeon is needed to weigh up the pro's and con's of the operation which hopefully goes quickly and smoothly to offer some relief to Jack who lives with this pain daily.
Despite all this, Jack is always smiling and in high spirits and growing cheekier by the day (he must get that from his mothers side)! He is really looking forward to the release of the new Cars 2 movie this Thursday which we've promised him everyday for the last 6 months that we'll go and see the very first day it opens.
Take care everybody and we'll keep you updated
Love and Light
Joe, Cass and Jack
Update for April 2011
Hope you are all well and life isn't to hectic coming into Easter, wow where has the year gone?
Firstly I would like to update you with Jack's condition. This past week Joe and I have been hit with the "FLU" that is seeming to come around with the change of weather, unfortunately Jack seems to have it now too.
We have put him straight on Antibiotics and are doing physio at home. Hopefully he can fight this one off straight away as it is his birthday on Thursday and he will be turning a big 3.
He has requested many presents for his birthday and to have a party in the big park, the all abilities park in Broadbeach, we are looking forward to fun with his friends and family.
The past month we have accomplished much around the house, a new front door widened so Jack can drive through his top ramps in the wet, his new hospital bed has arrived, it has truly made such an impact with his sleep pattern and he seems so much more comfortable every day, it has also made life 1000 times easy to care for him.
We have a new standing frame on order that is suited to his personal needs and his new headrest is just awesome, it definitely helps with travelling in the car and when he is having his low tone fatigue days.
We are still yet to finish the yard and lay the turf but soon enough we will get there with many hands needed to cart the dirt around the back!
Just a fortnight ago we went up to see our respiratory specialist at the Royal Children's Hospital, since having been hit with the 2 viruses his sleeping pattern has seemed to become irregular.
He is waking up with headaches at least three times a week. We went to have a lung function test done although Jack couldn't work out how to use the machine we now have the mouth piece to practice for our next visit.
We had to go for a spinal x-ray, the results weren't so good. Over the past 6 months Jack spine has slightly changed in 3 areas showing signs of scoliosis. This is bound to happen although Joe and I were hoping not for another 10 or so years. Because of this change in his back we now also have to go and have another sleep study done to see if any of his lung functions have changed.
This is scary news, specialists in the SMA field are yet to figure out when is the right time to have a spinal rod operation, this operation is very big and would take months to recover, however if his lungs are too weak from the sleep study and lung function test we may not be able to have it at all. This would lead to the lung slowly being crunched/suffocated by the spine and lead to eventually being on a breathing machine full time, this may take many years or happen very rapidly. If we have to go down the surgery lane, we would prefer to hold off the spinal cord surgery as long as possible as he is a growing boy.
Note: With SMA sufferers a local anaesthetic could potentially take them if their lungs aren't strong enough to withhold the surgery and infection.
We have figured there is a lot to look into, we might have the sleep study and lung function test and it may reveal there is nothing wrong with the muscle weakness and deterioration, therefore we would just closely monitor it over every 3 months?
Being in this position Joe and I have decided to wait and see what the tests reveal, take it day by day and we have come to realise what is ahead of us.
Now on to some extra fun stuff, last weekend we attended a SMA gathering with 7 other families from QLD, four of the families reside in Brisbane, one of the little boys name was also named Jack and he has just turned 3. Our Jack had so much fun running a muck around the park with the other Little Jack, going on the all abilities wheelchair swing, chasing the kids under the forts, a few slides down the slippery dip with mum and he also went bush bashing over the fields, it was such a fantastic day out, to share stories and meet the families we have spoken with over the phone and via email, we look forward to many more catch up's in the future.
Take care for now, love and hugs, Cassy, Jack and Joe
Thank you so much to Harcourts Foundation for their very generous donation of $8,800. This will enable Jack to be able to have his hydro therapy pool installed which is vital to help Jack's muscle development
Update for Jan/Feb 2011
Hi All,
We thought it was time to give you a little update on Jack's progress.
Christmas was a real wow factor for us this year, Jack is now able to open up his presents due to his muscles gaining that little bit more strength. Joe, Jack and I got to get away from the house for a nice camping holiday, it was awesome to get away and forget about everything on the house.
Jack had a ball, we took both cars, so we could carry Jacks everyday equipment and
his equipment took up one whole side of the tent. It was great to have everything there so Jack was still in his routine and comfortable, Jack really enjoys camping.
Over the past few weeks Jack was struck down with two separate Viruses, the first virus he had was called the Rotavirus.
This was a very nasty bug that attacks the stomach and bowel, he was hospitalised and on the IV drip and seemed to fight it off ok, he had no energy though and was very fatigued.
We were home for a couple of days and I noticed he was going back down hill, it was a trip to the GP straight away, this time, as he had a clear chest we were told to wait to see if he worsened before throwing him straight on the antibiotics.
Within 3 hours Jack was unable to cough properly all gaunt and white so I went down to get the antibiotics. That was the night from hell.
I called the hospital and they said we would have to wait in the Emergency Department for a Pediatric Registrar, it was around 1:30am when I called so I figured it best to stay and care for him at home and in the morning call the Pediatric Director, by this stage he could barely talk, choking on his coughs, totally off his food and water, he just didn't seem interested and I could tell he was sad. I made the call and I took him straight up to Ward 5.
Jack had now caught a virus called, Respiratory Syncytial Virus. This virus attacks the lungs in small children, Jack's lungs are already weak so he felt it twice as bad. After being in hospital a couple of hours he was straight onto the IV drip for fluid antibiotics and onto the
oxygen to ease his struggled breath. We stayed in for 3 days, the little champ is a fighter, it is amazing to see how fast he can go downhill and come back, we have been giving him bag and mask physio to help him get deeper breaths and more oxygen deeper into his lungs. In time this hand machine will strengthen his lungs, I have also kept up his percussion to break up his secretions.
He seems to be back to himself, though he still has a nasty cough that I think will stay around for a little while.
It was a very testing two weeks going through this kind of double whammy with the two virus's. It was very scary and a feeling of being unsure of what is to come next. It has taught us that Jack isn't just able to have panadol like many others could with a virus, he grows bacteria with any infection and this bacteria attacks his weak lungs, we prayed for a speedy recovery and can only pray that his immune system builds up before the colder months, if this can happen witha Virus I would hate for him to get a very bad flu.
Moving on to other stuff, we would like to say a very BIG HEARTFELT message to the family at Harcourts Real Estate for giving Jack the benefits that he surely deserves, we
will be able to use his equipment everyday and know that we are so close to being finished with the exterior renovations, hydro pool and last but not least the gardens.
If anyone would like to help Joe and I out over the weekends or during the week please feel free to send me an email cassy@jacklenehan.org or give me a call 0402 838 131, we have so many little bits and pieces we need to plod along and finish.
The interior is finished now and Jack is able to utilise his wheelchair on his ramps and anywhere in this house, we just can't wait until he can achieve this outside.
Best run the little critter has just woken up, love and light to all xox
Cass, Joe and Jacko
Jack's Update - December 2010
Hello Dream Workers Family!
Well it has come to that time of year when everyone is rushing around madly for that festive break. We too have had a very busy past few weeks getting excited for Christmas.
Jack has been going from strength to strength lately, his daily routine is even more jammed packed as we are back on the road with his loaned standing frame.
He spends an hour to an hour and a half in their every day, afterwards we carry on to his daily physio and massage.
His roll play on the trampoline is also truly making huge steps of change; he is able to now roll from side to side and back again.
We have now completed most of the major renovations that we needed to have done to make the house wheelchair accessible. It may not be picture perfect materialistically, however Jack can zoom around inside the house and outside in the yard, we look forward to this Christmas having Jack so comfortable in his own shell that there will be no need to worry about his needs and what is needed for his quality of prolonged life next! (Not until next year anyway!!!)
Just last week in the pool Jack almost lay in a plank position holding his head up. This has been the first time ever that he has achieved lying flat holding his head up, I could have screamed with excitement, SO LOUD, inside I praised him and pinched myself. Its moments like these that take your break away.
We are really looking forward to having a nice break then returning to a year where our daily, weekly and monthly routine is already broken down for a year of success, we are scheduled in for more private physio and extra speech therapy sessions, we look forward to playgroup, laughs, learning, improving Jacks physical abilities fun times and meeting new play friends.
Just last week we were asked if Jack would be a "Role model" for a world wide project for Neuromuscular conditions, early intervention for diagnosis.
The aim of the project is to help family physicians world wide become more familiar with the rarer neuromuscular conditions so that diagnosis is not delayed.
It will be part of their continuing education and will be used all around the world. After 2 and a half hours Jack was exhausted, however, the amount of footage that was received for others to learn was great. The Project is carried out from a world renowned ex Physio called Helen Posselt.
It has come to that time to send a very big kiss and a heart felt hug to everyone from Jack, Joe and myself we thank each individual that has followed his story, cared for his well being and quality of life.
Thank you to Deb and the Dream Workers for all of your dedication to changing the quality of life for many disadvantaged. Thank you to everyone who has helped us along the way this year, there are so many people to mention, you know who you are, we look forward to sharing our journey with you next year.
May your Xmas be filled with love, light and laughter, good food and great times with your families.
With love Jack, Joe and Cassy Lenehan xoxoxox
Jack's Update - October 2010
Wow, what a hectic past few months it has been in the Lenehan residence. Since our first update there has been so much going on I’m not sure where to start.
Firstly, for the last 8 months, we have been searching for some of the best specialists in the field for Jack's condition and we have finally found a team.
At the end of September we went up to meet Jack's Team of specialists from the Royal Children’s Hospital. His new respiratory specialist named Dr Leanne Gauld has reviewed Jack and feels he is presenting of that of a normal child thus far without any serious infections to date (fingers crossed). Dr Gauld went through an array of techniques of how to give physiotherapy airway treatments for his lungs to be cared for properly when he is sick. We touched on the future and what SMA can bring to weak muscles with a sick child. We also touched on machines that Jack will have to encounter one day, for now we need stay away from those machines to make his body work on its own strength and immunity.
The same day we had our first consultation with Neurologist Dr Anita Cairns. It has been a long time coming and it was a little heart crunching having to fight to get Jack under her wing but we got there. Anita is a renowned specialist in her field and treating children with Neuromuscular diseases. We went over Jacks whole history, touched on the disease and boy did I learn some stuff about how to treat and live with the disease for now and to study the condition a little so I understand clearly our Journey for the future. Jack is presenting well in an all round general way.
He hasn't presented with any first signs of scoliosis and his mobility isn't showing any signs of slowing down, his breathing seams strong and we haven't as yet had any contractors of his bones so at this stage we are flying with an overall good report. The tests that were run from Anita all came back with an average to normal result his bone minerals are that of normal and all of his organ levels are fine which is telling us he has adapted well to the drug Epilium and he is showing no signs of fast deterioration. Anita forwarded a website to learn and look into the disease, if you to are very interested please go to http://www.treat-nmd.eu/patients/SMA/sma-care/, this website is full of information of treatment for now and into the future with many neuromuscular conditions.
Now onto some fun stuff!!! Jack is back at hydrotherapy and depending on the weather will be going up to 3 times a week, we are looking forward to having some enjoyable family time over the weekends, this will include swimming! Jack has a new physiotherapist Naomi from Montrose Access. Naomi is very qualified in her field and seems to amaze me how Jack responds to her. Jack's hydro is very important to his respiratory exercise and this is the only form of exercise he can get. We have had so much fun in the pool as to date with his limbs seeming to get a little bit stronger being able to last longer without being so fatigued.
Last week Naomi and I introduced Jack to the walking frame! Jack absolutely loves the walking frame. He swings back and forth and tries so hard to get his legs moving. He does show frustration throughout this exercise as it’s almost like he is sending the message and its just not getting there, this breaks my heart, but Jack never gives up he just tries again and again and again. Our next piece of equipment we are needing to raise money for will be a particular standing frame that will suit Jack until he is 7/8 years old.
Now onto progress with the house. We have soooooooo many little pieces to do around the house in general. Since making the choice to have Jack able to reach every corner of the house and yard in his chair we are still trying to get things finished. All of his exterior ramps are finished and we have 2 sheets to put on the roofing before we can start on the hydro pool. This is only going to be a small heated lap pool, we have been fortunate to have had the concrete and steel donated, but we need to raise the funds for the components of the pool.
I just received our car back yesterday that has also just had the conversion done to allow Jack to drive in himself, how life has changed this last week, words can't explain how much easier this is for Jack and myself.
Just last weekend Dream Workers held a Mexican night fundraiser for Jack. What a night of fun, love, laughter and many fun memories. Marco was such an enthusiastic MC it wouldn't have been the same without him. We were very proud to have Dream Workers put on an event like that for our son. Thank you to each of you for your dedication towards the night, to our supporters, friends and family. Thankyou to everyone for supporting us on this very special night and over the past year, we just couldn't do it without you.
I must get going, I will be back soon to let you know how our journey is going. In the mean time if you would like to volunteer your time to help us with the renovations, interior and exterior we would love to here from you, we need your help in carpentry, gardening, labour, painting and several little other areas, we would really like to try make our house feel like home before Christmas, our renovations have been creeping along now for 9 months. We look forward to hearing from you.
Love and Light to you all,
Cassy, Joe and Jack
Additional October Update:
Thank you to the Gold Coast Community Fund who supported us with $10,000 towards Jack’s wheelchair. In conjunction with Channel Nine, the Gold Coast Bulletin and the Suns, they are also holding a White Christmas stocking appeal.
The Community Programs Officer Corey Bell came over with Karmichael and our family has known him for years so the Suns are kindly donating a family pass for the year for Jack, Joe and I. Our story is also on their site and that Karmichael would like to stay in frequent contact, we are really excited to be able to stay in touch!
We are also putting up the carport this weekend and hopefully some painting will start too! YAY!
Love to all
Jack, Joe and Cassy
Update on Jack - August 2010
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 level s, 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:
