We received the quilt on Tuesday & it is absolutely perfect! daisy loves it - I must admit we did not take it into hospital this time as she was vomiting significant amounts of bile & I really did not want it to be ruined, however, she is now home & much better & as you can see happily tucked up with it!
Please extend our thanks to everyone involved for their kindness & care in making this happen for Daisy - it is such a beautiful thing & every square has a picture that Daisy loves. It will be truly treasured & has made Daisy & us very happy!
Thanks again - you can keep up with Daisy's news on my blog
www.suburbansuperwoman.blogspot.com or Daisy's postpals page (Daisy N)
With Love & Thanks
Steph, Andy & Daisy
(and Theo, Xanthe & Jules - big brothers & sister)
Sadly, Daisy passed away on 31/01/17 :(
Daisy was born 3 days before christmas in 2004 & was 2 months early. She spent 8 weeks in the neonatal unit & was diagnosed with Costello Syndrome. She spent most of her first year in hospital both locally & in Great Ormand Street,& was diagnosed with a number of issues including a heart defect,visual impairment & severe gastrointestinal problems. Children with Costello Syndrome are at 17% increase risk of developing malignant tumours & she is screened for these every 3 months.
In spite of her diagnosis of Costello Syndrome, Daisy's clinical issues have not always been typical of a Costello child,& her geneticists are now testing her bllod to see if she also has another syndrome running in parallel & making her completely unique.
Her struggles with her gastrointestinal system came to a crisis earlier this year - she has always been tube fed & normally spends around 20 hours a day attached to a feed pump. However, in September, her symptoms worsened & her doctors at GOSH discovered she has aggressive pan-enteric colitis. This is where the entire gastrointestinal system is scarred & ulcerated. It has been caused by her immune system going haywire & attacking her gut.
Since this diagnosis, Daisy has been dependent on Total Parenteral Nutrition (nutrition through her vein) for all her nutritional needs. The initial treatment to manage her condition with massive amounts of steroids has not worked & she is now on large amounts of immunosuppressants. As her immune system is not functioning properly,she is at a high risk of infection & is currently on large doses of highly toxic antibiotics to manage a blood infection.
The diagnosis of Costello Syndrome meant Daisy has a reduced life expectancy because of the associated risks & problems. Her severe gastrointestinal disease & autoimmune issues have reduced that prognosis further.
Daisy is developmentally delayed. Her receptive skills are very good & she understands alot,but her communication skills are limited. daisy uses a makaton to communicate. Daisy is also registered blind.
Daisy is in hospital at the moment & in July will have been there for 10 months.
Everyday with Daisy is a blessing,she is a much loved & treasured daughter & younger sister to 3 siblings.
She takes each challenge with positivity & a lighting spirit & her strength of character & happy nature keep us going through the tough times.
Written by Stephanie & Andy (Daisy's mum & dad)