Guest Blog: A Father’s Day Message from Martin Winter

Olivia Winter was born on the 10th August 2010 and like most fathers, I remember trying to stem the tears of joy at her arrival. My wife (Sarah) and I had been waiting for this momentous occasion for a very long time.

Fathers day blog 1

At six weeks of age, primarily due to faltering weight and a pale complexion, Olivia was diagnosed with Diamond Blackfan Anaemia (DBA).

DBA is a failure of the bone marrow to produce red blood cells required to send oxygen around the body. Olivia had her first blood transfusion at six weeks of age and as she approaches the grand old age of 5, she has now had in excess of 60 transfusions following a failed steroid trial at 18 months.

With Father’s Day fast approaching, what better time to reflect on what being a father means, particularly to a child with a genetic disorder. I have found the experience challenging, motivating and felt totally helpless at times, however, I have realised we are the fortunate ones; there are many who suffer considerably more and for that, I am truly thankful.

father's day blog 2

As a father, I often hope her condition will miraculously disappear but I remain a realist. To help me come to terms with her condition, I often asked myself the following:

  1. Can we cure Olivia?
  2. Can I take her place to avoid the endless needles and monitoring?
  3. What can I do to make a difference to her condition and the DBA community?
  4. How can we make Olivia’s childhood as ‘normal’ as possible?
  5. How can we promote blood drives/donations?

For the past 2 years, I have been a committee member for DBA UK, a charity providing support, hope and research to those affected by Diamond Blackfan Anaemia in the UK. The charity continues to provide significant support and advice to my family and as a fundraising co-ordinator and trustee, I have an opportunity to share my experiences and raise funds for vital research into finding a cure. We continue to live in hope!fathers day blog 4

Olivia continues to amaze me with her courageousness, determination and personality and as parents we are truly proud of her. If there were 2 things I could change about her, it would be to a) Cure her of DBA and; b) Stop her singing Let it Go from Frozen every 5 minutes!

Let’s raise a toast to all the fathers on this special day, especially those caring for a child with a genetic disorder.

It’s a celebration honouring fatherhood, paternal bonds and the influence of fathers in society. Keep up the good work!fathers day blog 3

What Is A Dad?

A dad is someone who

wants to catch you before you fall

but instead picks you up,

brushes you off,

and lets you try again.

A dad is someone who

wants to keep you from making mistakes

but instead lets you find your own way,

even though his heart breaks in silence

when you get hurt.

A dad is someone who

holds you when you cry,

scolds you when you break the rules,

shines with pride when you succeed,

and has faith in you even when you fail…

Sign up to Jeans for Genes Day on Friday 18th September 2015 to help us continue providing vital care and support services to children like Olivia. jeansforgenesday.org/signup

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