Harlow's story

As a family we would like to raise money for Edinburgh Children's Hospital Charity and the critical care unit. We would like to give back as they have been a massive support to us whilst our daughter has been in critical care for over 21 weeks in Edinburgh.

Blair (Harlow's dad) is going to take part in a 72 holes of golf in one day challenge to help raise some money. Blair will do the challenge closer to summer next year for daylight .

We have been reluctant until now to share Harlow's story but we hope it can raise some money for such wonderful people that make a difference.

Our beautiful baby girl was born in April 2023, unfortunately she had a few complications which was a big shock to us all. She was born in Aberdeen and lived in the NICU for 5 weeks before moving onto Aberdeen's children hospital.

Harlow has a rare genetic condition called congenital myasthenia, this causes muscle weakness. Alongside this she has Pierre Robin Sequence, hand contractors, club foot, weakness of the diaphragm and bulbar palsy. Her airways are affected because of her genetic condition and pierre robin which has resulted in Harlow's airways closing off and causing desats on a weekly basis since birth. She has had a NP airway previously but she now has a tracheostomy. Harlow requires to be on a ventilator 24/7 to receive BYPAP to support her airways. Harlow has defied the odds on many occasions and is our little fighter.

On the 11th June 2023, Harlow suffered a respiratory arrest which required her to have chest compressions to bring her back to us, on the 12th June she was air lifted to Edinburgh's Royal Hospital for Children and Young People, where she has lived in critical care pretty much since. Since arriving in Edinburgh it has been a roller-coaster for her and us, we have been separated as a family a lot. Without the critical care staff team and the support of the charity things would have been much tougher for us. The Charity has brought some joy to our lives during such a difficult time, they have provided Harlow with baby sensory and singalong time which she loves!! The Hub where we can go just for someone to talk to. Trips to the zoo for Bailey. The little things they have provided has meant so much.

Harlow was started on some fancy medication when she was 3 weeks old, but it needs time to work. Over time the hope is her airways will get stronger as she grows. Her condition should not limit her life span but her airway complications might. However she has not allowed her condition to define who she is, she has gone from a baby that couldn't cry and could only move her hand slightly to a baby that is rolling around her cot and getting into some funny positions. She is able to make noises even with her trache and let's her sassy personality shine through. The things she is able to do today at 6 months old, is an amazing surprise to us all. She is now becoming more stable and will hopefully be stable for transfer back to HDU in Aberdeen in the near future.

It has been hard for me as her mum as I have only been able to see our son at the weekends and have watched Harlow desat regularly and have episodes of no respiratory effort. Bailey (our son) has only been able to see his sister a handful of times because of his age and her being in critical care and has been away from me a lot. For her dad only being able to see his daughter at the weekends and the added pressure of running a business to keep a roof over our heads.

We would like to give money to the critical care team to source some more toys for the sick babies and children and without funding the charity wouldn't be able to provide such an amazing service. Edinburgh Children's Hospital Charity - charity number is: SC020862. The money raised will be split between the charity and the critical care unit. 

Thank you for taking the time to read .

Any donation is very much appreciated.