Over the past few weeks, we have all learnt a lot about Canavan Disease! it’s extremely rare with less than 10 people in the UK to have it!
Recently in America 2 children have gone through “Gene Therapy” which we are hoping & praying this is something Poppy may have in the near future. Claire & Paul are starting to talk to doctors about it & hopefully we can update you all on the progress of this journey. We are hoping to get Poppy to America & at this stage hope is all we have
You can follow Poppy’s story on Facebook
Or on Instagram
As you may have seen on Claire’s Facebook she has bravely told the world that their precious beautiful baby girl Poppy has been diagnosed with neurological metabolic disorder called Canavan Disease which is a life limiting illness.
As a friend I want to take as much pain away as I possibly can and to have no money worries along with everything else I know will make a big difference!!
With Claire on maternity leave & Paul being self employed, missing days of work for hospital visits & to spend more time with family, I would like to ask you for a donation no matter the size, everything will help them from hospital car park fees, petrol, new sensory toys, equipment to help and support Poppy for now and the future!
My main goal is to get that baby girl the Pushchair, Bath chair and a little seat she needs and deserves with all the correct support!
(To give you an idea a little seat for poppy would cost roughly £200 https://www.completecareshop.co.uk/childrens-aids/childrens-seating/tumble-forms-feeder-seat-small?gclid=EAIaIQobChMI6IDtu7Pp8AIV1vZRCh1V0Qs5EAQYAyABEgKJ6fD_BwE&sku=G47079)
Although Poppy’s illness couldn’t have been prevented I want to say that people with young babies (or anyone actually), do not accept any diagnoses or a health visitor signing you off over the phone. Covid is not an excuse for things to slip for our children’s sake & yours. Be aware, trust your gut like they did. Push & push!!
If you’ve donated thank you, you have no idea how much it will help & as Claire said keep in touch, make precious memories!!
For now, we’re getting in all the cuddles, love and kisses from Poppy.
Thank you again, Charlotte x
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