IMPORTANT DRUG INFORMATION

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 LIVES'

Mission Statement

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.
 
  Felix was born at home in March 2013 to an eagerly awaiting family. From the moment he arrived he has captivated our hearts along with everyone he meets. When Felix was 5 days old we found out he had cataracts and needed them removed. Our little man then began to struggle with feeding, he stopped gaining weight, his growth slowed and he wasn't hitting developmental milestones. A hospital stay at 3 1/2 months old for a respiratory illness began a search for a diagnosis for his struggles. We have been very fortunate throughout our journey to have a team of Drs who pursued a diagnosis for Felix. All through this time though, Felix was always happy and engaging and showed a zest for life.

When it became clear that Felix had Cockayne Syndrome, I found AAF and got in touch with Jayne and all of a sudden our world opened up. We began to correspond with families from around the world who had children with CS. We also had the opportunity to meet other Australian families as well as Jayne and Mark at a wonderful get-together organised by Karren, Mum to butterfly Lauren.

We realised after this that we wanted to go to the AAF conference in 2015 while Felix was doing well.

This was realised after the generous support and fundraising from our family, friends and local community.
 
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.
 
Welcome 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 info@amyandfriends.org or cockayne.syndrome@nhs.net

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!