Supporting people with Cri du Chat Syndrome and their families

Alfie's Story

by Gemma M on 04 August 2016

Alfie was born on July the 26th 2014. The pregnancy and birth was normal and Alfie was a healthy weight of 7lb 7oz. Alfie did not take to feeding well at all we were in hospital for 5 day to try get Alfie to feed during this time a nurse noticed Alfie cry and his stiffness.

She asked the paediatrician to come and see Alfie and they came down and did some checks and said that they were happy with Alfie and we could go home. Alfie continued to have problems for three months and during this time the health visitor changed Alfie milk 5 times. Alfie was only drinking 1-2mls every 4 hours and did OT wake for feeds in the night.

When Alfie was three months old he was admitted to hospital with dehydration and failure to thrive. We were referred to the SALT (speech and language therapy) team who were great and got Alfie on a small nook teat and he began to feed better. As the month passed and as I spent time with other mums I noticed Alfie was not progressing as he should and was getting lots of infections. I continued to meet with Alfie’s team who referred him to physio at 8 month old and we all worked together with the paediatrician.

In September 2015 Alfie had a genetic blood test done due to the fact he was not reaching any of his milestones and failure to thrive and poor feeding. In November 2015 we got the results that Alfie had CDC syndrome. I still remember been sat in the room and being told - I had never heard of CDC and in mine and my husband’s line of work we were aware of lots of syndromes. We felt so alone and that no one could give us any answers so we joined the CDC group on Facebook and we found this a great comfort to our family and found out lots of information that no one else could tell us and this group has helped me through the hard times. We saw that the group was having their annual gathering and we did not know if we were ready for this but we took the leap and booked onto the weekend and it was the best thing we did and the weekend helped my husband. So on CDC awareness week I decided to put 5p bottles and posters in the local community to bring awareness because when we told people they did not know what it was. We have had some bottles donated to our JustGiving page and some are still out in the community. Then our local pub put on a darts competition in aid of CDC and they raised awareness and £725.40. Alfie’s nursery wanted to support him and has done a sponsored walk which will raise over a thousand pounds and now a family friend is doing the Tough Mudder Mud Run in August in aid of CDC and has set up a Just Giving page. The support we have received from our community and friends and family has been amazing there has been lots of donations raising over £1,352.91 and there is more to be added and our community all know what CDC is now. We are so lucky to have the support and there is also talks of more awareness days that my community have taken the lead with. My family and Alfie are very lucky to have amazing people around us.