Navigating Rare Conditions: Noah’s Story

Due to having complex needs and requiring specialised care, Noah and his family have spent a lot of time in the Royal Hospital for Children, Glasgow. They have benefitted from various charity-funded projects such as the Play Team, the Office for Rare Conditions, and Ward Visits.

Noah's Hospital Journey

7-year-old Noah was born with several complex conditions including Hydrocephalus, Dandy Walker Syndrome, VACTERL association and epilepsy.

He has been an inpatient on Ward 3B at the Royal Hospital for Children, Glasgow, for the past 11 months. Noah is seen by Neurosurgeons, Surgeons, and Gastroenterologists, and is under the care of several teams at the Children’s Hospital, including Neurology, ENT, Occupational Therapy, Physical Therapy, Plastic Surgery, Urology, Respiratory and Endocrinology.

Noah has three siblings, Brooklyn (13), Naomi (14) and Calvin (9). It has been difficult for Noah’s parents to juggle having Noah in hospital and take care of his older brothers and sister. Marta has had to miss some of their school events and important milestones such as sports days and school assemblies to be by Noah’s bedside in hospital.

How Your Donations Help

Noah and his siblings have benefitted from a number of special visits thanks to Glasgow Children’s Hospital Charity, including The Scottish National Team, Superheroes, and Star Wars characters.

“The staff of Ward 3B have become like family, we are so grateful for all of their support.”

Marta, Noah’s Mum

Marta meets regularly with Claire Dinning, the Patient Navigator in the Office for Rare Conditions, Glasgow. Claire has been working with the Office for Rare Conditions Glasgow since January 2023 as a Patient Navigator.

Glasgow Children's Hospital Charity is proud to fund Claire's role through grants provided by Health and Social Care Alliance Scotland. Claire has engaged with many families affected by rare, low prevalence and undiagnosed conditions, offering support and signposting. Her role is the first of its kind in Scotland and she is working tirelessly to ensure equitable access to support for everyone affected with a rare condition.

“When I meet with Marta, I listen to her and try to identify any areas that I can support. I have shared information on specific support groups for Noah's condition and other charities which can support with different aspects of care. Sometimes it is just being someone that will listen and reassure. I have given guidance on preparing for meetings with health professionals by signposting the BRAN method of questioning so that there is an understanding of treatment plans and joint decisions on care.”

“What are the Benefits?

What are the Risks?

What are the Alternatives?

What would happen if I did Nothing?”

BRAN questioning method, Claire Dinning, Patient Navigator

Euros Luck and Play Team Fun

In the Euros Hospital Sweepstake this year, Ward 3B drew Poland, where Noah’s parents were born! With the help of the Play Team, Noah has enjoyed making Polish flag decorations for the Ward.

The Play Team are a big support to Noah and his family. Alison, the play leader on Ward 3B, visits Noah every day with new arts and crafts and toys.

Noah loves SpongeBob, and the Play Team decorated his ward door with characters from the show. His Dad and Brother also surprised him by dressing up as SpongeBob and Patrick!