Metronidazole (also known as Flagyl® or Metrolyl®) may cause acute liver failure in children with Cockayne syndrome and should be avoided. Please alert your doctors to this.
Health professionals can obtain further information from Dr. Brian Wilson
Any further drug reactions in this patient group should be reported to the regulatory authorities in your own country.
Amy and Friends are
delighted to extend support
to Australian families and
medical support network -
working hand in hand with
Felix and Friends to 'MAKE A
BIG DIFFERENCE TO LITTLE
Felix and Friends is committed to creating a network of support for children with Cockayne Syndrome and their families. We aim to connect families with specialist medical practitioners to facilitate earlier diagnosis and improve quality of life through improved access to the latest medical research and therapies. In addition our goal is to assist families to make a personal connection; to share their journey, to educate and increase awareness, and reduce the isolation of caring for a child with a rare syndrome.
Being at the conference was a life changing experience.
Getting to know other families in a similar situation, or
who had been through what we are going through made us feel
as if we had a whole new extended family.
Realising how wonderful and important this experience was, and knowing other families in Australia I really wanted them to have the opportunity to experience what we had in our own backyard. So now we are on a whole new journey, one that will hopefully see a Felix and Friends conference in Australia in 2017.
Our life has been forever changed in ways we could not have imagined. Felix continues to amaze us by his progress. He uses a walker and is very deadly with it- look out for your toes! He uses basic signs and has a few words, often surprising us when he decides to use them. In a typical day you can often find him having conversations with his dog Gypsy, out on the town enjoying a babaychino and socialising with everyone he meets or going to play group or therapy. Completing his day is when his doting big sister Connie comes home from school and they enjoy playing together or snuggled up on the couch watching The Wiggles. Then when his Dad gets home he try's to tell him all about his day.
I wouldn't change anything about our life as it is today. It has brought us to a point where we have learnt to love and appreciate our blessings, small or large. Felix and the other CS children we have met have a spirit that warms your heart to its core, and one hug from them can be all that you need to turn the bleakest day into one of contentment and joy. Our butterfly children can never be forgotten.
to Amy and Friends - Cockayne Syndrome Support
Who are Amy and Friends?
Our group was formed to facilitate the support of children and families suffering from Cockayne Syndrome (CS). Our group consists of CS sufferers, their parents and siblings, their extended families, family friends, representatives from medical disciplines, non medical therapists and other interested parties. We organise meetings for group members to share experiences, knowledge and to gain support from each other. We assist families in attending other support opportunities and taking part in CS research programmes. Sufferers and families are able to meet others in similar situations to themselves, perhaps for the first time ever. This makes them feel less isolated and helps them to learn more about this illness. Families who have lost children can meet with someone who has shared their experience in the knowledge that their child will never be forgotten.
What We Do:
Amy and Friends have an annual family/medical conference. This is attended by specialists from across the globe. Our children and families have the most amazing time!
We hold a weekly siblings club called My Time To Be Me. This group is being piloted in the North West UK area and we hope to open similar clubs in the near future! Siblings love this time that is just for them....they experience many different projects - ideas are set by themselves and have included music/photography/CSI and much more! The children have bonded well with their peers and have gained their 'own identity'. They have grown in confidence and self esteem!
Amy and Friends take part in research programmes across the world. If you would like further information regarding this please email either firstname.lastname@example.org or email@example.com
We provide equipment where possible to childrenyoung adults and have contacts with other organisations. We have been able to distribute sensory equipment/ipads for communication and independence/walking aids and helped with wishes.
Amy and Friends hold an annual Mums/Dads/children and young adults fun day out.
We are advocates for families and much much more!