According to a publication from the Basingstoke Gazette, a Basingstoke family is raising money for the children’s hospice center that supported them through the loss of a child. Jessica and Adam Roach lost their younger son, Hector, when he was born prematurely last October. Hector had been diagnosed with trisomy 18, sometimes called Edwards Syndrome, while in the womb.
About Trisomy 18 (Edwards Syndrome)
Trisomy 18 is a rare but severe genetic condition associated with numerous developmental abnormalities. Individuals with trisomy 18 often fail to meet prenatal growth expectations, and many are born underweight. Organ abnormalities, including those of vital organs like the heart and brain, may also develop before birth.
Any of the numerous health problems that frequently affect trisomy 18 patients could be, on their own, fatal. Most with trisomy 18 die before birth or within the first month. Only five to 10% of trisomy 18 patients live over a year after being born — and often have severe intellectual disability.
Paying it Forward
Hector Roach was still in the womb when he was diagnosed with trisomy 18. He was born prematurely in October 2018, and only got to spend a few hours with his family.
Naomi House, a children’s hospice service in the United Kingdom, quickly offered their assistance to the Roach family in their time of need. Hector was kept at the hospice for two weeks after his death to give the Roach family time to spend with him. “…That enabled us to spend such a long time with him. The staff there were just amazing,” said Chris Calnan, grandfather to Hector and his older brother Hugo.
To repay some of the support the Roaches received and still receive from Naomi House, Calnan and his wife, Tina, are organizing a fundraiser. On Saturday, July 6th, at 7:30pm, the Kempshott Village Hall in Basingstoke will host a raffle featuring live music provided by Never Was — Chris Calnan’s band featuring Tubeway Army’s old drummer Jess Lidyard.
Tickets at the door are £10. However, interested parties are strongly encouraged to buy tickets in advance online for just £5 each. You can do so here (donate the amount and comment the number of tickets you’d like).
Hospice centers provide valuable services not only to patients, but also their families. However, end of life care isn’t readily accessible by all. What role should hospice centers play in our healthcare system? Share your thoughts with Patient Worthy!
