A LOCAL grandmother has thanked a friend and former colleague for raising funds and awareness for mitochondrial disease – motivated by two of her grandchildren living with the incurable condition.
Marianne Roberts’ grandchildren Bailey, six, and Hugo, 15 months, were both born with a rare mitochondrial disease, with Bailey the sixth person in the world to have this particular type and Hugo the seventh.
On Sunday, Gawler’s Howard Davies trekked 35km in The Bloody Long Walk! to support the family.
Marianne said she worked with Howard teaching at Immanuel Lutheran School for about eight years and “loved working with him”.
“I was so happy to have Howard come on board – he is very kind-hearted and generous and will help anybody out,” she said.
“He has grandchildren too, so he knows where I am coming from as a grandparent in getting support for this and we are so appreciative of anyone who can do the walk or raise any funds at all.
“Last year we had a group of mums from the school who did it.”
Mitochondrial disease is a debilitating genetic disorder that robs the body’s cells of energy, and can cause multiple organ dysfunction or failure.
“It affects their oxygen exchange, so they get tired very easily and Bailey will tell you that her batteries are going flat, so she needs to rest,” Marianne said.
“The children are my son’s, Geoff, and Britt Roberts who live at Tarlee and also have another son, Hunter (four), who does not have the disease.
“The kids require ongoing medical support, speech, OT (occupational therapy) and physio, and Hugo requires a special bath and high chair because he doesn’t have that core strength yet to sit up by himself or walk.
“Hugo is also fed through a nasal gastric, so he is fed totally through the nose and isn’t able to swallow in the right way.
“Bailey is doing really well and they are calling her the poster child for ‘mito’. She now attends school full-time.
“She is a little angel, is absolutely delightful and really kind and loves her little brothers. She is always going up and kissing Hugo in his chair.”
Marianne said ‘mito’ is treatable but not curable.
“Bailey is a testament to it being treatable and her parents are very good at recognising when she is tired or when she needs a break or a day off,” she said.
“They are very normalising with her and don’t wrap her in cotton wool. They are very aware of her and Hugo’s needs and what needs to be done.
“Mito in itself is very common, and there are so many different conditions connected to it like diabetes.
“A lot of it isn’t diagnosed until a lot of kids actually have a crash in health. Bailey had an incident when she was about four months old and ended up in the children’s hospital for seven weeks and Hugo has had three critical incidents as I would call them so far.
“Thank you everyone for your ongoing support and please think about doing the walk next year.”
To donate to Howard Davies’ fundraiser visit (https://event.bloodylongwalk.com.au/fundraisers/howarddavies).
A Bloody Long Walk for a cure
Ellouise Crawford
GAWLER East’s Howard Davies completed his first Bloody Long Walk! on Sunday, cheered on by the very people he set out to help.
The fun run–type event was in support of people living with mitochondrial disease (mito) and saw Mr Davies trek 35 kilometres from Carrick Hill to Glenelg.
Mr Davies was supported to take part by his good friend Marianne Roberts, whose grandchildren Bailey, six, and Hugo, 15 months, were both born with a rare mitochondrial disease.
He said it was a great to have them wave him on along the route, which he was able to complete in seven hours.
“It was about half way along the walk when I bumped into them,” he said.
“You don’t know about a condition until you know someone personally with it and then you take an interest and become part of that community.
“…It was quite a wonderful event; I was surprised that it wasn’t more known about because there were a lot of people doing it.”
The former school teacher had completed nine consecutive City to Bay events prior to this year when it was cancelled due to COVID-19, and said Sunday’s event turned out a great alternative.
Mr Davies said he would like to thank all those who sponsored or donated his Bloody Long Walk! having raised over $1000 for mitochondrial disease research.