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“I’m sorry, your baby’s brain isn’t developing normally.”

Can you imagine? Some of you will be able to because, although I thought we were the only couple going through it, turns out we weren’t.

Freddie was one of 6,000 children born yearly, without a diagnosis to explain his special needs and disabilities. I was told, at my 20 week scan, that my baby’s brain wasn’t developing normally. What followed were some of the most stressful and heartbreaking times in our lives. No one could tell us how severe his disability would be or if he would he live or die.

This year, during the Covid-19 Pandemic, another 6,000 children will be born without a diagnosis. They risk severe health complications and even death. This is likely to be one of the most frightening times in the lives of these new Undiagnosed families and for all the families already petrified and isolating or shielding.

We Were Offered a Termination up to 39 Weeks.

2nd June 2011. Freddie was born naturally and spontaneously at 35 weeks. After some time in SCBU, we were sent home and left to our own devices with no support. We were alone.

Freddie in SCBU

Then one day, when Freddie was about three years old, we found SWAN UK. This was a total game changer for us. People who were just like us and yet nothing like us, all bought together because our children had no diagnosis.

I owe SWAN UK, the support network, the community and resources my mental health and sanity, in what were extremely dark times.

Like us, all the children and families who are supported by SWAN UK are some of the most medically complex, vulnerable and isolated in the UK. 

‘I’m terrified and isolated. I’ve been told by her home ventilation team she won’t survive even a mild version of coronavirus. She would be unlikely to be ventilated in ITU if it came to having to choose who to give the beds to. SWAN UK gives me the support and the friendship when times are hard and something I couldn’t do without.’ SWAN UK Parent

April should be SWAN UK’s biggest fundraising month. But, due to Covid-19, all but one and half staff have been furloughed to try and save money. We fear it might not be enough to keep going.

SWAN UK desperately need your help to ensure they can continue supporting the thousands of families across the UK who need them. 

Please please consider, if you can, donating even a small amount to this amazing, life saving charity. Click here to go straight to their fundraising page. I know there is pressure on us all but if you are still working or feel you can spare some change, please consider supporting SWAN UK. Their families are frightened, vulnerable and isolated. This Pandemic has isolated them further and the risks to children’s lives are extremely high. Thank you xx

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