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Rachel

Rachel is a part time baker and healthcare blogger who started raising awareness of stoma surgery following the birth of her son Jake. Jake was born with the same condition as Rachel, Hirschsprungs Disease. The disease affects 1 in 10,000 births in the UK every year, where the ganglion cells in the intestine are not present which are needed to move waste through the digestive system. Both Rachel and Jake needed all their large bowel removed and a few centimetres of small, having surgery within the first few weeks of life. Surgery was carried out under the care of Noah’s Ark Children’s Hospital in Wales of whom Rachel is very proud to be Family Ambassador for.

Hirschsprungs Disease can lead to secondary conditions meaning no one case is the same. With a return to secondary school teaching not possible following the birth of son Jake, Rachel used her time to document and share her experience of raising a child with a stoma. Using social media as a platform to raise awareness, Rachel connected with parents in the same position and helped those starting in their Hirschsprungs journey.

Jake had a very tough start in life with 10 surgeries to date and gastrostomy surgery carried out at 18 months old for artificial feeding. Little did Rachel know that 4 years later she would be having her second stoma surgery, after having the first one reversed at 2 years old due to complications after child birth. Her son Jake is now a thriving 5 year old who inspires her every day with his bravery and love of life.

Rachel uses her platform to not only educate and share her life experiences, but to also celebrate what having a stoma means to her. She is a keen runner and aims to do a half marathon next year with her new least if life giving her the ability to run and play with her son, the way she hadn’t been able to for years.

One of Rachels proudest moments was being chosen as part of the Be The Change movement with Pelican Healthcare and Respond. Rachel and her fellow Be The Change Voices were invited to speak to government and council members, to share the stigma and discriminations faced both as an individual and as a parent to a young ostomate. She lives by the philosophy of turning negative experiences into a learning opportunity and wants give young ostomates like Jake, a future with no stigma or fear living in society with an invisible illness.

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