Mareyah was not expected to survive birth but is now looking forward to celebrating her 2nd birthday as she meets Prince Harry

On Saturday July 8th, Prince Harry paid a visit to Leeds Children's Hospital, where he met Mareyah Joseph-Webster and other seriously ill youngsters who are being helped by his charity WellChild.  Mareyah was diagnosed before birth with the life-limiting condition Edwards Syndrome, more commonly known as Trisomy 18. The little girl’s life expectancy according to doctors, if she was born alive, would only ever be a mere matter of days as opposed to weeks or months, let alone years. Remarkably, Mareyah is the first child from the UK to be given a tracheostomy, something her family knew she needed, and with the support of a neonatologist in the US they succeeded.

Mareyah, who is described by her proud family as a ‘warrior’ is doing fantastic now and is getting ready to celebrate her 2nd birthday in the next few weeks, a truly wonderful milestone for her family. Last week she met the doctor that helped save her life when the ‘Gift of Time’ conference was held in Leeds to raise awareness of Edwards Syndrome. The conference was attended by doctors and nurses from the region and was organized by Mareyah’s grandmother Patricia Smith.  It was a resounding success and a truly inspirational day; the hope for the family is that more babies like Mareyah will be allowed lifesaving treatment that is normally withheld from babies with this condition because Trisomy 18 was previously described as “incompatible with life.” Mareyah is a beautiful glimmer of hope for so many, including other families who receive poor diagnoses for their unborn babies. Mareyah is sure proof that these special children are anything but ‘incompatible with life.’ Although Trisomy 18 is undoubtedly a life limiting condition, Mareyah’s family believe she is a striking example of the fact that some children born with this condition can and do survive.

Mareyah’s mother Sonya told the press, “We were honoured to have Dr. Martin McCaffrey from North Carolina, and also a young lady Saskia from Oxford, who is 25 years old and has Edwards Syndrome, join us at our conference.  Dr. McCaffrey has saved my daughter’s life and for that I am ever grateful.“

Meeting Prince Harry is amazing I can’t believe we have been chosen by the hospital to have this honour,” Sonya said. Speaking to Prince Harry at the hospital Mareyah’s mother explained how she is currently learning ventilator skills to enable Mareyah to join her five other siblings at home in Meanwood, Leeds.

Little Mareyah's life is proof that children diagnosed with life-limiting conditions are not 'incompatible with life' as some inside and outside of the medical profession would have us believe. Rather, these special children need real love and their families deserve robust support and life-affirming care. Mareyah’s case has proven that when perinatal and hospice care is introduced, lives are saved. Life in all of its stages, perfect or imperfect, is precious.  Abortion, which is so often advocated for when a baby is diagnosed with a serious condition, is never the answer. Every life counts and has the innate power to transform the lives of those it touches. Perinatal and hospice care for these precious children is the progressive and dynamic way forward. These children deserve to be loved and celebrated – and they are worthy of protection. We will continue to support these little children and their families and promote the importance of empowering women and children with life-saving care.

 

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