Shevonne Zara Waines
Giving Back For Henry
Fundraising for Great Ormond Street Hospital Children's Charity
Story
My husband and I decided to set up a Team GOSH fundraising page after spending over a year at Great Ormond Street Hospital with our son Henry. I’m writing this on Boxing Day 2018 as we spend our second Christmas away from our family, at Hospital, in London.
Henry was born with an airway disease called Long Segmented Tracheal Stenosis and Left Pulmonary Artery Sling. It is extremely rare and often undiagnosed. GOSH see around one child a month needing surgery for this condition from all of Europe and parts of the Far East. Thanks to the wonderful NHS and the research and expertise of Great Ormond Street Hospital and the European Specialist Tracheal Team, Henry has survived. He had his first operation 24 hours after he was born and since then we have lost count of the number of surgeries and general anaesthetics he has had. He spent the first 9 months of his life in cardiac intensive care at GOSH, which is a phenomenal place and now he is on a transitional care unit preparing for home. Henry now has a tracheostomy and he is ventilated via this 24 hours a day. He is 13 months old this month and has never learnt to eat properly so currently he is trying to learn how to do this. The tracheostomy means he doesn’t have a voice either. This takes some getting used to, but over time he should learn to eat, speak and breath fully himself, we just don’t know how long this may take. Henry has no neurological issues and is developing like any child who hasn’t been in hospital for over a year. He is a true miracle hitting all of his developmental milestones now.
This week we have been able to spend our first night together as a family in an appartment provided by the hospital, to assist us in preparing to leave hospital in the next couple of months. We cannot tell you what it means to us to have these precious nights together as a family which is something most families take for granted everyday. We did make it home with Henry for four precious days a week after he was born but this was before we knew about his airway condition. We truly cannot wait to get him home again.
We have had the worst experiences of our life this year and have seen our baby boy go through things you couldn’t ever imagine, but we are extremely lucky to still have him. On several occasions we have come close to losing him so we feel privileged to see every step, smile and kiss he blows. We have met many families who have lost their children this year which is just unimaginable. Our heart goes out to them and our thoughts of their continued bravery dealing with the loss of their child every day.
We have thought often about the doctors, surgeons and nurses who have cared for Henry who spend their days working with extremely ill children and some days losing them. The saying “not all hero’s wear capes” is most poignant for Great Ormond Street Hospital.
Whilst being in hospital, our wonderful family and friends have been fundraising for Henry to try and give something back to the hospital. This page is a way of keeping track of any fundraising anyone does for our Heroic Henry so we can, over the coming years, know what we have all been able to contribute as a thanks for saving our little guy’s life and nurturing him back to health.
Henry was born with an airway disease called Long Segmented Tracheal Stenosis and Left Pulmonary Artery Sling. It is extremely rare and often undiagnosed. GOSH see around one child a month needing surgery for this condition from all of Europe and parts of the Far East. Thanks to the wonderful NHS and the research and expertise of Great Ormond Street Hospital and the European Specialist Tracheal Team, Henry has survived. He had his first operation 24 hours after he was born and since then we have lost count of the number of surgeries and general anaesthetics he has had. He spent the first 9 months of his life in cardiac intensive care at GOSH, which is a phenomenal place and now he is on a transitional care unit preparing for home. Henry now has a tracheostomy and he is ventilated via this 24 hours a day. He is 13 months old this month and has never learnt to eat properly so currently he is trying to learn how to do this. The tracheostomy means he doesn’t have a voice either. This takes some getting used to, but over time he should learn to eat, speak and breath fully himself, we just don’t know how long this may take. Henry has no neurological issues and is developing like any child who hasn’t been in hospital for over a year. He is a true miracle hitting all of his developmental milestones now.
This week we have been able to spend our first night together as a family in an appartment provided by the hospital, to assist us in preparing to leave hospital in the next couple of months. We cannot tell you what it means to us to have these precious nights together as a family which is something most families take for granted everyday. We did make it home with Henry for four precious days a week after he was born but this was before we knew about his airway condition. We truly cannot wait to get him home again.
We have had the worst experiences of our life this year and have seen our baby boy go through things you couldn’t ever imagine, but we are extremely lucky to still have him. On several occasions we have come close to losing him so we feel privileged to see every step, smile and kiss he blows. We have met many families who have lost their children this year which is just unimaginable. Our heart goes out to them and our thoughts of their continued bravery dealing with the loss of their child every day.
We have thought often about the doctors, surgeons and nurses who have cared for Henry who spend their days working with extremely ill children and some days losing them. The saying “not all hero’s wear capes” is most poignant for Great Ormond Street Hospital.
Whilst being in hospital, our wonderful family and friends have been fundraising for Henry to try and give something back to the hospital. This page is a way of keeping track of any fundraising anyone does for our Heroic Henry so we can, over the coming years, know what we have all been able to contribute as a thanks for saving our little guy’s life and nurturing him back to health.