My daughter Courtney and her Husband James have had to deal with much more than many family's have in a lifetime at their ripe young age of 28. Like all parents the joy seeing your siblings spread their wings, become self sufficient, creating their own dreams and raising a family is truly a very humbling experience, that makes you smile on the inside and outside. If any family is worthy of a little more lift in helping them soar above their cards that have been dealt in life this one does, as they have always put others before them, have never complained and just go about doing the best that they can.
Four years ago, on the 11th of September, they welcomed their first child into the world, Zachary Maxwell Withnall. Zac has had trouble from his first breath or lack there of as he was not breathing and needed to be resuscitated. He managed to survive due to the diligence of the medical staff and instinct from his mum. Further tests where conducted with the findings being Zac had a congenital heart condition. This came as a shock to all of the family as all indications during the pregnancy were as normal.
A congenital heart defect is a problem with the structure of the heart and was present at birth. Congenital heart defects are the most common type of birth defect and can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. Zac had a number of defects, not just one and because of this he was frail and normal day to day activities for a baby took a lot of effort for him. He would fall asleep feeding, to the point where he needed to be fed by an NG tube, as he wasn’t getting enough food or the nutrition he needed to grow and his hands and feet where always cold and blue due to the lack of blood circulation. Zac required a life saving operation but before he could undergo surgery, he needed to gain weight and develop a little more strength to enable him the best chances of survival.
Zac spent a month in hospital and this caused a lot of stress for the young family, with only Courtney being allowed to stay with him in the hospital and the constant travel to Westmead and back for James. After some time, and Courtney being a trained nurse, they were allowed to take Zac home to give him the care he needed in preparation for his operation.
A team of surgeons and associates working from Westmead Children’s Hospital were working on a life saving plan for Zac. At the age of four months he had been nurtured by his parents and was strong enough to have his surgery. They injected a thinning drug into Zac’s blood stream, put him on life support and removed his heart from his body. They untangled his arteries, installed a stent in his main artery, patched a hole, removed a valve, placed the heart back in his chest and stitched him up. During recovery his kidneys could not cope with the toxins in his body, so he was connected to a dialysis machine to help him recover. The operation was a success and the work the surgical team did was absolutely amazing but this did affect Zac in other ways and he was later diagnosed with cerebral palsy due to the lack of oxygen to the brain experienced at birth.
James, is a very motivated and caring young man. A charitable person who started his working career as a clown for a child entertainment company called Lollipops, he then progressed to calling bingo for an organisation called “learning links” helping children with learning disabilities and difficulties. James now works for Independent Monitoring Consultants as account manager.
In the early stages of James's water testing career he had a reaction to the chemicals used, preventing him from being able to continue with that line of work so he focused on the managerial side of the company. James was diagnosed with type 1 diabetes at the age of 5 and is insulin dependent, this has been something he has need to control closely for nearly his whole life and at times controlling his sugar levels and health has been difficult.
At the age of seventeen he had a severe case of muscular disorder to his left leg that has come and gone at different times and intensity over the years, just one of those medical mysteries. Two years ago, at the age of twenty-six the same thing happened but this time flat ended James causing him to be hospitalised for two months with doctors conducting more ranging tests trying to identify what may be causing this and come up with a cure. He has just recently been diagnosed with Multiple Sclerosis, firstly limping with his bad leg and currently having to walk with the aid of a walking stick. Indications have been that it is getting worse and he is now trialling different drugs in an effort to balance between stabilisation and the effect the drugs may have on other parts of his body.
Twelve months ago, the family welcomed Theodore Henry Withnall, little brother for Zac, who appeared to be born healthy and without any of the issues his older brother had. Courtney and James were overjoyed.
Zac has struggled to develop mentally and physically with his milestones like crawling, walking and talking have all been met at a much slower pace than most kids his age. He goes to a Physiotherapist and a Speech therapist one day a week to assist with his muscle strength and development. Zac is also about to commence hydrotherapy.
Zac has regular visits to Westmead Children’s Hospital to monitor his heart and conduct other tests to determine the extent of his disabilities. From this Zac has also just been diagnosed with an extremely rare condition called Limb Girdle Muscular Dystrophy, with only 4 cases known in Australia. Zac’s future is unknown. The condition comes from a makeup of Courtney and James combined genetics, it has taken 6 months of testing to diagnose Zac’s condition.
Due to the genetic nature of Zac’s condition and his slow development in his own milestones, Ted was also tested for Muscular dystrophy, his creatine kinase levels were extremely high and as I write this, we have just been informed Ted also has Limb Girdle Muscular Dystrophy which is another devastating blow to the whole family. Early indications is that Teds Limb Girdle Muscular Dystrophy may be more ingrained as he has not crawled yet, let alone walk, he has the most wonderful features but can not tell us what is going on time will tell.
Most cases of this condition are wheel-chaired bound at an early age and require a lot of support and care in everyday living . Currently there is no known cure for this condition.
My daughter has broken down and has vented but she is rock solid in her commitment ti resolve and deal with whatever lies ahead. Courtney and James have family and friends rallying behind them supporting them in many ways but we are all working class families with our own mortgages and very little savings. Eventually our children will inherit and benefit from all of our hard work but that is going to be a little too late for the Withnall family
They where going to try and have a third child, hoping to compliment the two boys with a baby sister but again due to the genetic nature of the parents, it is likely a third child could be born with Limb Girdle Muscular Dystrophy also.
We need to do something now to give the boys the best chance in working through their disabilities and turning a negative into positives for these precious little boys and their father.
Now down to what and how we can help this family, in particular with the power of social media can harness.
Their existing home is currently mortgaged to the bank and is far from being disability friendly, it is situated on a sloped block, with a split level style home, the hallways and door frames are narrow and there are multiple steps to the inside and outside of the home. We could renovate this but it would take a lot of work, time, effort and money, that we as a family just don’t have. We would need to do thing such as but not limited to installing a lift from the carport, move Laundry downstairs, install a laundry chute, install a dumb-waiter from new laundry to kitchen above, renovate bathroom, renovate kitchen, extend back sunroom and deck and install a ramp to back yard. Utilise the slope of the back yard to install climbing equipment designed to exercise Zac and Teds Muscles, install a disabled access pool, construct a ramp to front entry just to name a few things and while it is possible, the cost probably exceeds the benefit and would likely make this an un-economical solution.
Another option is to purchase a new block of land with the proceeds from "go fund me" that is fairly flat in an area close to their work, family and medical support. They then could sell their house use that equity, have a new one built suited to their disabilities and be prepared for what is ahead giving them peace and mind in having a relative small home loan to manage.
Over the years James has been very active thinking of others with his earlier careers as mentioned, but also raising awareness for both Heart Kids Australia and other organisations relating to health and disabilities. I have never heard him complain about anything, except when the Essendon Bombers lose.
I believe with your support we could make a big difference, not just for my family who are barely treading water in life but also in awareness for the many other people who suffer daily with congenital heart disease, muscular dystrophy and multiple sclerosis. This is what I would hope for, rather than seeing these three boys continue to deteriorate and not be able to function well on a day to day basis but most of all to increase their quality of life and whatever time they have left on this great thing I call “The roller Coaster of Life” as you have your ups and downs you just have to hang on and go with the ride. Time is of the essence for James, 28, Zac, just 4 years old and Ted 13 months old.
Thank you for taking the time to read my daughter's story. Any donations or support would be appreciated.