NICHS | Grace’s Story
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Grace’s Story

26 Feb


Imagine having a child with a condition so rare that a syndrome is named after her.

Angela and Anthony Spooner’s precious newborn daughter Grace arrived with several deformities of the heart. Not just that, but she also suffers from partial deafness, sight problems, cognitive difficulties, a twisted bowel and multiple spleens.

Grace, who’s now three, has already undergone multiple hospital procedures and two major operations. She’s been in hospital 13 times in her short life and had to be tube fed for the first 17 months.

After her first operation, to close a hole in her heart, widen her pulmonary artery and remove fatty tissue from the organ, her heart went into shock. For 24 hours her life hung in the balance. Thankfully she pulled through, but she faces more surgery as she gets older.

Experts at Queen’s University had not seen a case like Grace’s in 30 years.


As if Grace’s medical conditions were not bad enough, Angela had to give up work as a senior care worker, leaving her husband, Anthony, as the family’s sole breadwinner. This brought financial pressures, and Anthony, who is a self–employed taxi driver, was forced to work so hard that he ended up in hospital himself.

This is the reality of congenital heart disease – and this is why The Baby Hearts Study, which we are funding to the tune of £172,000, is so important. While Grace has adapted well to her health problems, she still has many hurdles to overcome. She tires easily because of continuing difficulties with her heart and lungs. She is deaf in one ear and has only 70% hearing in the other. As a result, her speech development has been affected.

We want to see a world in which no child or parent has to go through what Grace, her mum and dad and her brothers Matthew (11) and Ben (5) have had to become used to. If we can unlock some of the mysteries of congenital heart disease, we’ll be well on the way to achieving that.

Please support the Baby Hearts Appeal with a donation today. Together, we can give babies the healthy hearts they deserve – and save many, many lives.

Thank you.

If you would like to support us, you can set up a small, regular monthly gift or give us a donation today.

To help our Babies’ Hearts Appeal with a regular monthly gift, please click here to set up a direct debit.

If you would like to make a donation today, please click on the yellow Donate button.

£25 could help pay towards the recruitment of a family for the research study.

£50 could help cover the costs of the cardiac nurses’ support for the study for one week.

£250 could help cover the costs of the cardiac nurses’ support for the study for one month.

£1000 could help pay for the Baby Heart’s Study for one week.

£5,000 could help pay for the Baby Heart’s Study for one month.


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