Saturday, 26 May 2018

Bliss - For babies born premature or sick

'And though she be but little, she is fierce'

William Shakespeare

I stood with my friend this morning as she waved her now 14 year old daughter off on an outward bounds trip to North Wales.  She is the hope and dream of a parent currently sitting beside an incubator in the Special Care Baby Unit. 

This is Louise's story

'When I was 29 weeks pregnant with my first child I became very ill. I went straight through pre-eclampsia to full blown eclampsia. One ambulance ride later, my daughter was rudely evicted from her growing place, wrapped in bubble wrap (my husband asked if she came delivered in that!) and taken off to Special Care Baby Unit. (SCBU). Weighing 2lbs 9 oz to start (dropping down to 2lb 4 oz).

All the normal experiences that I had been expecting didn’t happen. I never saw those nice delivery rooms with baths and relaxed music playing. Instead for 36 hours I didn’t even get to meet my new daughter but just had a small polaroid picture of her that a nurse had taken. Then when I was well enough to be wheeled through to see her I couldn’t get her out of her incubator but only touch her through little panels. It seemed very surreal. I knew she was mine but was missing all those first moments.

However Leah got bigger. With the help of the amazing staff she started taking liquids - 0.5mls every other hour. She came off her ventilator and could be got out of the incubator for short periods for cuddles; then she took some milk and gradually got bigger. Every gram was counted!

She progressed from intensive care to special care, eventually to the room they called nursery. Leah came out of hospital 6 and a half weeks later weighing 4 lbs 5oz.

It’s a bizarre experience having your child early. Leaving hospital without them every day. You fall between the gaps, not under the care of the hospital, not under the care of the community health visitors as you’re never at home. Navigating all this new information, emotions and the daily rollercoaster that is the progress (or lack of progress of a premature child).

I was given a book with the contact number for Bliss if I needed to talk to anyone but to be honest I never called. I was too busy getting on and I was in a fortunate place, I had a great support network; people who drove me to the hospital every day so that I could spend the days with Leah while Chris went back to work and friends that supported and got excited about my beautiful child, but there are many who do not have that or are dealing with older children at home (I can’t imagine how pulled they must feel).

A couple of years later my friend had a premature baby. She was at a hospital where they had a Bliss worker and I saw the amazing work that they did, helping my friend process all that was happening. Bliss have an aim to have a contact in every hospital with a SCBU. Having a premature or sick baby can be both stressful and frightening. If you are able to bring your baby home the full impact of what has happened over the previous few weeks can be overwhelming. Memories of the birth can come rushing back and parents may show signs and symptoms of trauma.'


The charity Bliss can offer emotional support and practical advice to the parents. Bliss also mounts political and awareness campaigns to help those affected in the future.

If you would like to support the work of Bliss please do so via this link. Medical progress has made leaps forward in survival rates but supporting those parents both emotionally and practically will help families affected by premature birth to both survive and thrive.

Thursday, 10 May 2018

Harrison's Fund

'Banished to this cave, Father Time must listen to the world's every plea - for more minutes, more hours, more years, more time'
Mitch Albom, The Time Keeper

Time is precious.  Families battling Duchenne are acutely aware of time, and their lack of it. Duchenne Muscular Dystrophy currently affects 2500 children in the UK. Children with Duchenne are unable to produce dystrophin, an essential component in muscle growth. As a result, their muscles waste away one at a time. Children with Duchenne are typically wheelchair bound at the age of 12 and can suffer respiratory failure, heart failure, and other debilitating orthopaedic complications.

Duchenne is a ticking time bomb.  It is 100% fatal.  There is no cure.

But there is hope. Harrison’s Fund has one goal - 'to get as much money as possible into the hands of the world's best researchers, who are working to find a cure for Duchenne. New advances in gene therapy and molecular medicine are being made and it is clear we are on the cusp of a major breakthrough'.


Harrison's Brunch is an annual event held to raise funds and awareness of Duchenne.   The charity asks you to take time out for food, friends and family this June and raise money for Harrison's Fund.  The money raised through Harrison’s Brunch this year will go to fund the clinical trial of pioneering new drug Carmaseal, which could be vital in the battle against Duchenne.


Fortycubed for Harrison 

When I was narrowing down the list of charities to include on the Fortycubed list my good friend Claire was undergoing chemotherapy for Breast Cancer.  I asked which charity she would like me to support in her honour and I had wrongly assumed it would be a cancer related charity.  She has a friend living in Australia whose son has Duchenne. Claire identified Harrison's Fund as a UK based charity fundraising for research and raising awareness of Duchenne.  She hosted a table at the fundraising dinner in October and so far we have raised £340 for Harrison's Fund but we want to raise more!  

Please get in touch if you are able to host a fundraising brunch in June or at any other time of the year!  #maketime