Joining Lines for Florence

Raising awareness of CCHS and Florence's story for CCHS Support Group because everybody needs hope!

217 %

£544.00

raised of £250 target

by 14 supporters

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CCHS Support Group

We support people affected by CCHS to advocate, research, network and educate

Charity Registration No. HMRC Registered

Story

Thank you for taking the time to visit my JustGiving page.

As part of my Joining Lines project I aim to raise money for a wonderful charity that supports families with CCHS. Joining Lines aims to bring people together in an exhibition of crochet doilies, sustain traditional techniques and ideas and bring back a sense of community. I absolutely love working with people and get excited when I can share what I know and love with others. It excites me even more that I might be able to do something good at the same time, like raise some pennies for a worthy cause.

Choosing a charity wasn't hard to do. CCHS UK is a charity that helps families with CCHS to network, provides education as well as supports research. I was made aware of this charity after hearing Florence's story and how new parents Jonny and Natalija were adapting to life with a baby with CCHS.

Here is Jonny and Natalija's story...

"Florence was born on the 21st of October. Our perfect, beautiful little bundle of joy. All seemed well but 5 hrs after she was born the midwife asked the doctors to do some checks on her. During that time she wasn’t breathing properly, went blue in the face and ended up having to be taken to intensive care and put on a ventilator.

The following six weeks were filled with worry, heartache and pain whilst we watched Florence stop breathing whenever she went to sleep. Her need for the ventilator to do it for her became more evident every time she slept.

After weeks of tests Florence was finally diagnosed with Congenital Central Hypoventilation Syndrome CCHS).

CCHS is a rare genetic condition which results in an abnormal development of the body’s automatic nervous system in early fetal life. The main consequence is a failure to automatically control breathing, which is always present during sleep, but may occur in some individuals when they are awake.

The condition is so rare it only affects around 100 families in the UK and we have found the CCHS support group an amazing help. Not only for help and advice but for hope. Hope is what gets us through. Hope that with the right support and proper ventilation Florence will be able to lead a relatively ‘normal’ life.

The CCHS support groups link families living with CCHS and they hold annual conferences giving families the opportunity to connect with others facing the same challenges as well as an opportunity to meet the leading medical experts to improve our understanding of this rare conditional.

We will be heading to our first conference in September and can’t wait to meet the other families we have been talking to and gain a further understanding of Florence’s condition. Knowledge about it is very limited so first hand experience from people living with the syndrome will be priceless."

If you too have been moved by Florence's story and can spare a few pence then please make a donation to help this wonderful charity continue to support families dealing with CCHS.

Thank you April x

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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