Posted on 24th January 2020 by ns_admin


We wanted to give a shout out to Jeanette, one of our fabulous fundraisers. Here is her story, please support her if you can.

On 8th March 2020 I will be running my first Cambridge Half Marathon in order to raise money for the Noonan Syndrome Association. My daughter Rose has the genetic condition Noonan Syndrome and she has already conquered many challenges in her life.

At 4 ½ months it was found she had a heart murmur and this was characterised as pulmonary valve stenosis. She also had developmental delay and growth problems. At the age of 6 ½ she finally began growth hormone treatment. This has been successful in increasing her growth over her predicted final height of 4 feet 9 inches to 5 feet presently at age 14.

It has also built up her muscles which lacked tone causing her gross motor problems. She now actively participates in dance classes and helps out coaching younger children in dance and gymnastics. She does also have learning difficulties and now receives the correct support at her mainstream secondary school after implementation of her Education, Health Care Plan.

I am so grateful to the Noonan Syndrome Association for information on how to support affected children appropriately and also for organising the annual Families Day with invited health care professionals to educate on all aspects of the condition. Our family attended this amazing event for the first time in 2019 where we met other families and shared our experiences which was invaluable.

In order for this event to continue, as well as raise money for research into the condition, I ask you to sponsor me. Thank you.