We are a registered charity with a board of trustees - Each of our trustees has a personal reason for wanting to give their time and effort to the charity - Enjoy starting to get to know them from their stories below.


 

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Sarah Dearman
Chairperson

CHC Hi Blue RGB 500pxmy name is Sarah.  My son Liam was diagnosed with Hyperinsulinism at the age of 13 months, he is now 19 years old.   After graduating from University, I became a fully qualified Financial Advisor.  However, after Liam’s diagnosis and neurological complications became apparent, I was unable to return to work and became a full-time carer.  I feel very privileged to be a Trustee of The Children’s Hyperinsulinism Charity.   I am passionate about supporting families and raising awareness.  I am proud of how much our Charity has achieved and look forward to the exciting projects coming up. 

As Chair and Project Manager, I have been at the heart of all our major campaigns, fundraisers, projects and events. I love the challenges and diversity this role brings, there is always something happening and it's fantastic to be part of such a great Charity Team. 

Any spare time is spent with my family and my two boys Liam and Mark.

 


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Kirsty Pope

Fundraising Manager

CHC Hi Blue RGB 500pxI'm Kirsty and I am mummy to 7 year old Imogen who was diagnosed with CHI just before her 1st birthday, after spending many months in and out of hospital.

I work full time in the housing industry as a Sales Manager which I love to bits but it is very much an industry I fell into after having to give up my nursing studies when Imogen was born and quite poorly.

When I'm not busy at work and Imogen is at school (or asleep!!), I enjoy going to the gym, reading books, watching TV dramas and organising fundraising events!!

I have helped organise lots of events since Imogen's diagnosis including casino nights, raffles, a teddy bears picnic and Virtual Runs for the CHC!!

Family time is very important in our house as we spent so much time in hospital when Imogen was little; on our family days together we enjoy taking our dog Barney out on long walks, going on bike rides, going out to the cinema and going for meals out!

It was a great honour to be asked to become a trustee and I have loved being a part of the CHC family for past 2 years!!

 


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Amanda Dean
Family Supporter and Networking Manager
CHC Hi Blue RGB 500px My name is Amanda and I am a mum of 2 . My youngest son William was born with Hyperinsulinism. 
 
Before I had William I worked full time as a manager of a Learning Disabilities Home for Adults. I was the registered manager and was in charge of the day to day running of the home, staff and service users . I spent my time working alongside social workers, health care professionals and CQC. I always planned to return to work after having William but  unfortunately due to his high medical needs and development delays this was not possible. I became his full time carer. 
 
I love being a trustee and raising awareness for this amazing charity. In my spare time, when I get it, I love running.  I run with a local running club who have helped me train for a half marathon. I also love holding fundraisers and raising awareness for William's condition.
 
This journey is certainly tough at times but because of this charity I know am not walking it alone. 

 

 

 

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Steff Bradley

CHC Hi Blue RGB 500px, My name is Steff and I am mummy to  Fionn. Fionn’s Hyperinsulinism was luckily caught very early by one of the midwives in the maternity ward when he was only 3 hours old. He stayed in hospital for a total of 9 weeks and for his first year of life he was in and out of hospital quite regularly. Being unable to return to work due to Fionn's care, I became his full time carer. 

The Children's Hyperinsulinism Charity provided so much support to me and my family when we were first coming to terms with his diagnosis and even now dealing with everyday situations.

 I was so honoured to be a trustee of the charity to give back and help other families in the same situation. To ensure all Hi families out there know that they are not alone! 

 

 

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Ciara Grace

 

CHC Hi Blue RGB 500px, my name is Ciara, and my youngest son, Cillian has hyperinsulinism. Cillian was very sick at birth and he was diagnosed shortly after, at the beginning of covid in April 2020. We spent the majority of his first year of life in the hospital. I’m also Mum to Abigail(15).


Prior to this, I worked in Compliance and Legal sector, and Abi and I moved from Cork, Ireland to Solihull in the UK about five years ago.
I now look after Cillian and his medical needs, and developmental delays full time, and Abi also helps to look after her little brother.

I am so grateful to the Children’s Hyperinsulinism Charity for all their support to Cillian and our family and madly passionate about the Charity. I am truly honored to be a trustee since January 2022 and help in any way I can.  I’m excited for the future with the charity.

 

 


 

 

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Loraine Midda MBE

CHC Hi Blue RGB 500pxAfter an initial career of 20 years in the fashion industry, I discovered an affinity with computers. Through a woven path, this led me to a 23 year career in UK Parliament Digital, much of which was spent working with the Members of the House of Lords. In 2017 I was honoured with an MBE for my services to Parliament and my charity work for Haven House Children’s Hospice. In 2015 I also became a Mindfulness ambassador and teacher within Parliament.

 

However, my most important and proudest role is that of a Bubbie, (the Jewish Yiddish term for grandmother) to four amazing grandchildren. It is a privilege to be closely involved in all of their lives. From our very first grandchild, my husband and I had caring responsibilities one day a week, then along came his sibling twins, so 1 became 3 which was an interesting juggling challenge as there was only a gap of around 18 months. Almost 13 years later along came their cousin, Raffaella. We were very excited to be on hand to enjoy the same closeness. Having now retired, we were delighted to be able to look after Raffaella two days a week. We felt quite comfortable having had past experiences dealing with the handful threesome. However we were unprepared when Raffaella was diagnosed with Hyperinsulinism when she was just over a year old.

 

I was so delighted to come across the support that the charity offers. It gave me peace of mind to know that others out there knew what the family was going through and answer some of those questions you don’t even know you need to ask. It was a lifeline, especially as a grandparent as we did not want to add pressure to our children by continually asking questions about the condition.

 

I am delighted to have joined the board of trustees and look forward to the future for both my granddaughter and others with HI. I am committed to the vision of continued support and raising awareness to ensure early diagnosis.

 

The Childrens Hyperinsulinism Charity

The Childrens Hyperinsulinism Charity
Registered Charity Number: 1165562
Company Number CE005407

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