Help give Sabrina Moss the send off she deserves
No one should ever have to go through the pain of losing a child. Sabrina's parents are not only living this reality but have been dealing with the pain of knowing and expecting the inevitable for most of her short life.
This is Sabrina's story.
In August 2013, TJ tragically lost his sister after she was shot in Kilburn while out celebrating her 24th birthday. All children are a gift but after losing his sister, TJ saw his daughter as an extra special blessing from God so him and Sarah wanted to honor his late sister but naming their beautiful daughter after her.
Sabrina Niamh Moss was born on 27th November 2018. The end of the pregnancy came with some complications but nothing too concerning and Sabrina was born a seemingly healthy baby.
When Sabrina was 3 months old, signs started to show that she may not be developing as she should or hitting the milestones for her age. Sarah and TJ spent a lot of time looking for some answers from medical professions but were met with uncertainty and left with more questions. At 4 months, Sabrina suffered her first seizure. She was taken to hospital where she was rushed to A & E resus department and had to undergo a number of tests which mostly came back clear. Neurologists did however confirm that she had early onset epilepsy and they were discharged from hospital with appropriate medication.
4 months passed and although Sabrina's seizures were under control, she was losing her ability to move her limbs and had floppy muscle tone. Sarah and TJ unexpectedly received a letter from Great Ormond Street hospital stating the MRI results from the earlier admission to A & E indicated that Sabrina did in fact have a rare condition called PCH (Pontocerebellar hypoplasia). PCH is a disease caused by mutations in one of several genes, which result in degeneration of the brainstem and cerebellum. Patients are usually affected in early childhood and show little or no neurological development. After research, TJ and Sarah learned that babies born with this condition, particularly showing symptoms from birth, rarely live past their 1st birthday. This news was completely heartbreaking and devastating as I'm sure you can imagine.
Over the next 18 months, things got progressively worse. Sabrina started having painful daily spasms so the hospital prescribed her steroid medication which led her to contract another condition called Dystonia. This is very painful and Sabrina suffered on a day-to-day basis without being able to express her pain and discomfort. The steroids also caused her to have an unsafe swallow which evidently left her needing a gastronomy tube. This meant that she was no longer able to consume food or drink orally and relied on being fed through a tube. Approaching her 1st birthday, Sabrina had little to no vision, she was unable to walk, sit, hold her head up or have any voluntary movements. Sarah and TJ are at this point looking after and caring to Sabrina's every physical and medical need around the clock.
Sabrina was in and out of hospital, often spending long periods of time in both Barnet and Great Ormond Street. Although being previously told it is highly unlikely she will make it to her 1st birthday, she defied the odds and proved them wrong. Her 1st birthday was spent in GOSH dressed as Minnie Mouse surrounded by gifts, toys and balloons. Sabrina continued to fight against the beliefs of the professionals, even contracting and surviving COVID.
The past three months have seen Sabrina's condition take a drastic turn. Her care became incredibly intense and difficult; having continious seizures throughout all hours of the day, needing suctioning as the secretions became less managable and she was often requiring oxygen to get her levels to where they needed to be. At this point, they were told that Sabrina had between 6-12 months to live.
Just 3 weeks later Sabrina sadly passed away peacefully surrounded by her loving family.
Sarah and TJ have given Sabrina the most incredible love and care throughout the toughest of times and are now having to face life without their precious daughter. There are not enough words to explain what these two have been through so please help them to give their strong, amazing baby girl the send off she deserves by donating what you can.
Money raised will go towards the cost of the funeral with any left over being donated to Noah's Ark Children's Hospice in Barnet. Noah's Ark have been a huge part of Sabrina's care and have provided many happy moments in Sabrina's short life. Noah's Ark have gone above and beyond to accomodate Sarah and TJ's wishes and we know how grateful they are for this.
Please give generously.
Thank you,
Lucy & Leonie