Lynn Clark

My Activity Tracking

55
kms

My target 50kms

Who I am and why I am passionate about Medical Research..

Hi, 

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

My Updates

Thank you to everyone who sponsored me.

Dear Everyone,

I just wanted to thank you all for your amazing contributions to the 42k challenge to raise funds for The Children's Hospital Foundation for Medical Research (my chosen area).  Together, we raised a total of $2757.00 and we were 5th on the leader board for individual fundraisers.

That is an amazing effort for such a small group of people in total.

Zayden is in hospital at the moment after a few very difficult weeks, and the medical team are all working hard at finding solutions for his latest health issue.  They never give up, and we have all done something positive towards trying to find answers through medical research for all sick children. This is a feel-good moment for all of us as a Team.  We have made a difference and overall, there has been a total contribution to date of

$226,632.  

Today is the first day of spring and I know that the $2757.00 we have co-operatively planted will bring forth the fruits of healing for lots of children.

Thank you so much.   You are all mighty Australians with kind, caring hearts.

Love

Lynn Clark

​May the Southern Cross light your path at night,
And The Risen Son guide you daily.

Last Day for July - Total 111 klms

111klms - a Won, Won, Won for July for my fundraisers.  Bring August on for a fresh start.  Thank you, everyone, for your support.  Love Lynn

Day 9 - 4k swim - Honouring everyone who has kindly donated

4klm 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

Day 8 - 4.6k walk

LIght day today as life got busy.  Hope to put in a big swim tomorrow. 

Day 7 - 12.3 bike ride 1k swim - In Honour of Dr Kapoor - Pediatrician

Zayden 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.  

Day 6 - 12.6k Bike Ride. 1K Swim

Most visitors have left, pool not yet cleaned, so not overly appealing for anything longer than 1k.

Day 5 - 12.8k Ride - Too many tourists to swim laps today

Too many tourists in sea pool to swim today - not sure if it would be safe re COVID 19

Day 4 - 3k swim - in Honour of Dr Geoff Wallace - Neurologist

I 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.

Day 3 - 2kl swim 12.6k bike ride

Swimming 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.

Day 2 - 1+k swim 3klm walk

Chilly in sea pool, but I go numb after first 2 laps so all good.

Day 1 - 7k bide ride, 1.5k swim and 6k walk

Fitness level low since COVID-19 lockdown.  Trying to get it back up again.

Thank you to my Sponsors

$1.22k

Kate King

Love Jilli

$327.60

Anonymous

$208

Rylan

$104

Barry And Jan Leask

$104

Barry And Pam Graingerclark

Our donation is on behalf of our granddaughter Mia and also our friend's grandson Zayden who were both so lovingly cared for by Brisbane Children's Hospital (aka Lady Cilento Hospital).

$104

Aaron Kirkby

$52

Simone Stillman

Well done Lyn !!

$52

Rory Parfrement

Good luck with your goal

$52

Kate King

Millie’s friend good luck

$52

Joye

You are a legend Lynn. Have been thinking of you lately. How is Kevin? We must catch up next time I'm up to see my sister. Love and blessings. Joye PS Gorgeous looking boy!

$50

Alex Clark

On ya Lynn, on ya Zaddy and the other children!

$50

Lindi & Karl Rademeyer

Great cause, good luck to you Lynn!

$28.08

Joanne Talbot

$27.04

Josh & Bella

Best of Luck Lynn! Love from Josh & Bella <3

$27.04

Lee White

Fantastic Lynn. Lady Cilento has blessed our family too.

$26

Adele And Robert

Great job Lynn.

$26

Lynn Clark

Another kilo hits the dust from the exercise, so another donation from me. I don't mind if this costs me, it is a win-win situation. Thanks everyone for your support.

$26

Lynn Clark

Fitness Fundraising is a win-win for everyone. 1kilo of COVID19 fat knocked off! $25 for every kilo lost.

$26

Lily Grace Cheasman

$26

Lynn Clark

$26

Kaye Trower

Wonderful cause Lynn. All the very best for the 42kyourway.

$26

Adele

The boys will be very happy. The Children's Foundation has provided us with so much support over the years. They fund the music therapy program at the hospital that was the only thing that was able to give Zayden any comfort when he was very unwell. The play volunteers came to play guitar to Zayden even throughout the Christmas period. The foundation planned incredible shows and events and involved Rylan in them all and volunteers came to play with him daily to make his holidays fantastically fun, they came to visit with Santa on Christmas day in the ICU. The foundation collaborates with another wonderful charity to fill the freezer in the parent lounges with frozen meals, meals that have fed us many a times when we couldn't get off the ward. And the research, the research is what continues to help find new possibilities for kids like Zayden. Amazing charity, we couldn't have done without them.

$26

Jillian Boyle

Keep up the good work, hope you raise a thousand 👏😅😘

$25

Anonymous

Good job Lynn!

$20.80

Erina Haggard

Great Effort Lynn!

$20

Maddie Wallison

Keep up the good work Lynn, truly inspirational

$15.60

Sean Clark

Good stuff

$15

Ruben Rademeyer

Good luck Lynn