My Activity Tracking
My target 50kms
Who I am and why I am passionate about Medical Research..
I'm Lynn Clark, a 66 yr old mother and grandmother of a grafted family of 7 children and 11 grandchildren. Zayden, our grandson (photo above) is almost 4, and he has been very sick since birth. He had a severe movement disorder that made his body constantly have involuntary movements that twisted and contorted his body, plus he developed tremors.
He has had thousands of seizures throughout his life, and last year he developed another kind of movement disorder called dystonia. Dystonia is a vicious condition that results in the muscles contracting and tensing. At the start, Zayden’s dystonia came on as "dystonic storms" and very soon after he went into "dystonic crisis". His body almost all day and night contracted, so severely, that his own muscle contractors fractured both his tibias and constricted his vocal cords, and restricted his airway. He was unable to sleep, eat or do anything at all for months, and he was in continual pain. He was almost skeletal, as he couldn't keep on weight, even though he had a tummy button for feeding and medicine. By Christmas 2018, Zayden was fed through his veins in order to save his life. Zayden's condition affected every part of his body. He is visually impaired, he doesn't speak, he can't eat, and he has spent large amounts of his life in hospital living with horrendous pain. As grandparents, all we could do was look on and cry.
Through the persistent efforts of our daughter Adele (who travelled the world looking for answers) and the brilliant, compassionate Medical Researchers and Practitioners, there came some answers and solutions. They located a previously unknown mutated gene that identified the cause. He then had brain surgery that implanted probes into his brain and a battery in his shoulder, that connects wirelessly to an iPad. This system has the capability to reprogram his brain to send the correct messages to his muscles. By turning up the volume it stopped the tremors and dystonia.
Zayden was the youngest in Australia ever to receive a Deep Brain Stimulator, and second in the world. He is involved in ongoing research to ensure that more can be learned about the effects of this technology on dystonia in young children.
He is also on a medical Keto diet to stop the seizures and lots of other medical solutions that we can't pronounce or fully understand. He has numerous allied health help such as Physio, Dietician, Music Therapy etc, and he has a team of about 18 brilliant, dedicated Medical Specialists, plus loving, caring Nursing staff, and other Ancillary staff at Brisbane Children's Hospital (aka Lady Cilento’s) and at Westmeade Children's Hospital in Sydney. (The hospitals always put Zayden's needs first, and collaborated to get Zayden his operation, and continue to partner in his aftercare.)
He still has ongoing health issues, and his life and the life of his Mum and brother Rylan is about being at the hospital a lot. However, Zady is now often pain-free, happy, and going to pre-school. Zayden's goals post-surgery were to stay alive, sleep, breathe on his own again, be able to go back to school, and get his smile back. If you look at his photo, you will see Zady is doing a thumbs-up. This is a miracle in itself, as he can now control his body enough to do that, and his Medical Team has an ongoing commitment to ensure he gains more skills and quality of life.
You will also see that he has the smile of an Angel. Even when he was in ICU, he would still occasionally be able to give us his smile, until he got too ill, and he lost it altogether. Three days after brain surgery, Zayden fought so hard to give one smile to show the world he was still in there. (See photo above) He continued fighting, and even 5 months in hospital and unspeakable pain did not break his spirit.
That is why I am swimming, bike-riding and walking to raise funds for Medical Research, as one breakthrough helps children like Zady worldwide, and it gives Doctors the knowledge and tools they need for their young patients. The caring, compassionate, dedicated and often exhausted Hospital Personnel never give up, never complain, and never stop trying to heal, help and care for their patients and families. So please donate if you can, so children worldwide will be healed.
Thank you, Lynn, aka Nanny
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Last Day for July - Total 111 klms111klms - a Won, Won, Won for July for my fundraisers. Bring August on for a fresh start. Thank you, everyone, for your support. Love Lynn Share
Day 9 - 4k swim - Honouring everyone who has kindly donated4klm is the longest distance I have ever swum. It is amazing what you can do when you push yourself and you have a reason to do it. I wanted to honour the amazing donations received and the wonderful people who donated - Family, Friends, Friends of Family and Friends of Friends - people I haven't even had the pleasure of meeting. Australians have a good, good heart and I am proud to be one. Thank you, everyone. I haven't finished the race yet, we have this month and next month to go. I started early in case they lock us 'old folk' up again with COVID19. God Bless all of you. Lynn Share
Day 7 - 12.3 bike ride 1k swim - In Honour of Dr Kapoor - PediatricianZayden was in the hospital at SCRH on Christmas Day. Dr Kapoor from Brisbane Children's Hospital (aka Lady Cilento's) rang the hospital many times during his own family Christmas Day to give advice to the local doctors and to check on the well-being of Zayden and Adele. He has also been a warrior for Zady and never given up. Today, I exercised for Dr Kapoor as you are a legend. Heartfelt thanks and gratitude. Share
Day 6 - 12.6k Bike Ride. 1K SwimMost visitors have left, pool not yet cleaned, so not overly appealing for anything longer than 1k. Share
Day 5 - 12.8k Ride - Too many tourists to swim laps todayToo many tourists in sea pool to swim today - not sure if it would be safe re COVID 19 Share
Day 4 - 3k swim - in Honour of Dr Geoff Wallace - NeurologistI have gone an extra k today in honour of Dr Geoff Wallace, Neurologist at the Brisbane Children's Hospital who always goes the extra k for all of his patients. His dedication, compassion, kind healing heart and medical knowledge have been a Godsend for our grandson Zayden. Thank you, Doctor Wallace. Share
Day 3 - 2kl swim 12.6k bike rideSwimming getting better after COVID19 break. I trick my brain, first 40 I count 1 to 40 so I am going uphill, second 40 I count down from 40 to 1 so I am slip-sliding downhill to the finish. Share
Thank you to my Sponsors
Barry And Jan Leask
Barry And Pam Graingerclark
Lindi & Karl Rademeyer
Josh & Bella
Adele And Robert
Lily Grace Cheasman