A run for the Little People of Ireland
A Castlebar family is raising awareness of a condition called achondroplasia which affects their son, Michael. Here, Tadhg and Maura Hanrahan tell their story.
Our son Michael was born in April 2015 after an emergency C section. He was our first child and all seemed relatively well initially.
When Michael was about four months old he had a seizure episode with his face going blue for about 30 seconds.
At first we thought he had choked on something as he didn't have any body trembles.
He ended up in hospital in Mullingar and tests were carried out and we were awaiting further ones.
A few weeks later Michael had another seizure at home in Castlebar. We ended up in the local hospital which transferred him to Temple Street.
We were worried that something more serious was now at play.
On the Monday after arriving in Temple Street, Michael had a further seven seizures.
It was frightening to see his lips go blue followed by his face.
He had numerous scans and tests and eventually we got a diagnosis of epilepsy.
After one of Michael's scans we were met by an endocrinoligist, a specialist on hormones and related bone growth.
We were informed that Michael also had a condition called achondroplasia, a common form of dwarfism.
It affects about one in every 30,000 newborns. Up to 80% of those affected have regular average height parents.
All people with achondroplasia have short stature.
Characteristics of the condition include an average-size trunk with short arms and legs but particularly short upper arms and thighs.
Health problems commonly include episodes in which breathing slows or stops for short periods (apnea), recurrent ear infections, curvature of the lower back and outward bowing (bending) of the knees.
Michael recently had his tonsils and adenoids removed to aid his breathing while he has had grommets fitted to drain his ear infections.
Thankfully, Michael's seizures stopped after going on medication for epilepsy and he is now off that medication for a couple of years.
While we have had a lot to deal with we are also very grateful that Michael is generally very healthy.
He is a typically active four-year-old boy who loves all types of machinery and loves riding on his balance bike.
He now attends a local preschool and they have been excellent in accommodating his needs. We are also very thankful to the local health services who have assisted us in his care.
The reason for having written this article is to not only create awareness of his condition but to also raise funds for a charity that have been a great support to us - the Little People of Ireland (www.lpi.ie).
Maura reached out to them on Facebook after Michael was born. The organisation was set up by the Burke family, who have members with the condition.
Their daughter Sinéad, who has the condition, is a wonderful role model. She is a qualified primary teacher and has written articles for Vogue magazine and other national titles.
LPI sources relevant information on employment, education, disability rights, medical issues, clothing, adaptive devices and parenting tips.
Information is provided through workshops and networking. LPI also provides opportunities for social interaction.
The Little People of Ireland is a Registered Charity 20046774 (CHY (REVENUE) NUMBER 14382).
Every November we gather in Athlone where various families from every corner in Ireland come to support each other and the children get to meet others with the same condition as themselves. Families can access information on practical matters like clothing, toileting and seating. There are also talks featuring consultants, mental health activists and companies providing various services.
This year Tadgh is running in the Dublin marathon to raise funds and awareness for the charity.
We have set up a page on facebook - Run for the Little People of Ireland – Dublin Marathon 2019.
The page will contain a link where you can make a donation if you wish.
We would especially ask people to like and share the page as raising awareness is our number one goal.
We will regularly update the page between here and the marathon at the end of October.
If you are not on Facebook you can also donate on the idonate website at www.idonate.ie/TadhgDublin2019. We will also have fundraising cards around the local area.
If you would like to contribute in another manner you can contact us at tadhgnmaura@gmail.com.
To finish, if there are any other people or families with the condition in the Mayo area we would love to meet up with you and share a coffee and a chat and offer a bit of support to each other.