I Run 4 Michael organization
Hi. My name is Sarah Smith. Many of you know me as Hannalise Rose’s Momma. Hanna has Semi-lobar Holoprosencephaly, Microcephaly, Cerebral Palsy, and Diabetes Insipidus. We found out at 27 weeks gestation about her condition.
It’s likely been a couple of years now since some of my fellow HoPE Mommas led me to a wonderful organization on Facebook known as I Run 4 Michael. Each differently abled child is matched with a partner, a runner (they even have a group now for siblings). The runners run/walk and do other physical activities in support of the child they are partnered with. It’s a wonderful and empowering thing.
This is where we met Lynton Dawson, Hannalise’s runner. He’s from Northampton, UK.
Lynton plans on running in 2017 in the toughest marathon on the planet.
In his words..
“So if you weren’t aware already I will be turning 40 in 2017 & as part of my celebrations I will be taking on the Marathon Des Salbes, which has been described as the toughest foot race on Earth. A 6 day ultra marathon through the Sahara Desert covering 251 km or 156 miles. . . I will also be using this as an opportunity to raise some money and awareness for a fantastic charity called Families for HoPE. This charity supports children who have been diagnosed with Holoprosencephaly, which is a congenital brain disorder, and their families. Only 3% of fetuses make delivery and the vast majority don’t survive past 6 months. Hanna is still going strong since her birth in February 2013 and is coming up on 3 years now. She is one of the most awesome, amazing people I have ever had the pleasure to come across. Her courage and attitude is an inspiration and if this helps her and others like her it is worth the efforts. So please check out my justgiving page and feel free to donate, as it’s such a big challenge.”
Please check out his fundraiser https://crowdfunding.justgiving.com/lynton-dawson
Amazing run for an amazing cause. Your little girl is beautiful.
My son, Jordan, who was 1 on the 22/22/14 has ‘Alobar holoprosencephaly’, microcephaly, facial abnormalities with one eye fused shut, managed seizure …however plods on each day touching the hearts of everyone he meets with his courage and fight for survival in this world!
I live in Scotland. U.K, and no one as far as I know has this condition in this country mostly all stories I’ve read are from USA. I am trying to get Jordan’s story out to people to raise awareness and to never give up hope!
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