Robyn Edie/Stuiff
School teacher-cyclist Bryan McEwen has the support of his daughters Amelia, left, Claire and Merrin for the 280 kilometre Heart Kids Milford to Invercargill Bike Ride on Saturday.
Bryan McEwen's first task every morning is to check on his three daughters while they sleep.
The siblings - Claire, 16, Amelia, 14, and Merrin, 11 - have marfan syndrome, which effects their heart, lung, back and eyes. They were all born with the condition which also involves their aorta wearing out faster than normal.
Bryan's wife Helen and her mother, Beth Gibbs, of Invercargill, have minimal levels of the condition.
Helen and Bryan know their daughters receive good medical care but Brian's quiet early morning observation of the girls is part of the monitoring systems in place for them.
"There's no cure. Only monitoring, procedures and surgeries," Bryan said.
READ MORE:
* Double Brown sausages a hit with southern bogans
* Southland to warm up
* Classrooms built in fast-growing school
* New life in New Zealand leads to teen winning national ice skating title
The sisters have been to Starship Hospital in Auckland 10 times in total. The main reasons being Claire's heart operation and three back surgeries and Amelia's back surgery. Merrin's spine is starting to curb and will require an operation in the future.
Claire is in constant pain, mostly in the back, but it can be dulled by her taking two Panadol in the morning and two at night. The James Hargest College student can't sit or stand for a long time and finds relief when lying down.
"Last year she missed the last two periods [at school each day] because she was in so much pain," Bryan said
She hasn't had to leave early this year.
The pain is also reduced with heat packs, physiotherapy and massages.
"I'm used to living with it now," Claire said.
"It helps being surrounded by friends and my super great parents."
Robyn Edie/Stuff
Bryan McEwen, who is taking part in the Heart Kids Milford to Invercargill Bike Ride on Saturday, with his daughters Amelia, 14, Claire, 16, and Merrin, 11.
Watching movies and reading books are other ways for Claire to take her mind off the pain.
For two years (2016-17), every fortnight one of the siblings had a doctor's appointment. Now it's every three or four weeks.
The McEwen family found out about Claire having marfan when they were on a North Island holiday. She was 5 at the time and went to a Masterton doctor with a flu complaint.
"The doctor said: 'what are you doing about that [heart] murmur'," Bryan said.
She underwent tests and examinations, along with her sisters and parents.
"It never gets better," Bryan said of marfan.
"There's a good chance the girls will get to 60 ... 20 years ago it [life expectancy] was 30."
Bryan is the Otago-Southland representative on the board of Heart Kids New Zealand. He is also one of two volunteer support workers in Invercargill helping parents deal with their child having marfan.
On Saturday, Bryan will take part in the Heart Kids Milford to Invercargill Ride.
The bike ride is an annual fundraiser for the Southland branch of Heart Kids. Money raised is used to buy food and petrol vouchers for families with a child suffering from heart conditions.
People wanting to donate to the fundraiser can do so online at givealittle.co.nz/cause/milford-to-invercargill-by-bike.
No comments:
Post a Comment