Daisy- Jean: Life with Edwards' Syndrome
Donation protected
Daisy-Jean was born on 6.12.2018 with a rare but serious genetic condition called Edwards' syndrome. Sadly this will mean that Daisy-Jean is not likely to be with us very long as there is not a known cure for her and survival rates are low.
We are raising funds to help Verity, Adam and their two sons Olly and Jack spend as much precious time as they can with their new daughter and little sister. These funds will be used to provide transport to and from the hospital, for visits and appointments whilst Daisy-Jean stays on the Neo-natal ward at Leeds General Infirmary. It will also help to provide support to the family during the next coming days, weeks or months as well as to adapt their house in hope of being able to bring their baby girl home and care for her there with any specialist equipment needed. Maybe even a family day out to make as many memories as possible and bond with her while they can.
Although the outlook for Daisy-Jean is not promising, She is currently 6 days old, gaining weight (50gms so far!) and free from all the wires and monitors she was previously covered in. She is fighting as much as she can and we are enjoying every day we have with her despite the devastating decision to not operate on her heart made by the medical team. She is not giving up easily!
Verity & Adam have a small support system made up of close friends but very little family, Which is why we are reaching out to the community for as much help as possible to make this heart breaking situation less stressful where we can. As Verity is now on maternity leave and with the baby, Adam is caring for their two boys. Financially things are not easy with very little income and costs are high with daily trips to and from the hospital on public transport for the family as well as future costs rising in preparation for the end of Daisy-Jeans journey. We would love to help Verity & Adam be able to give their daughter a special send off when that unfortunate day eventually comes as any family should be able to.
We will aim to be updating this page as often as we can with any news, progress and pictures of Daisy-Jean's story alongside all the fundraisers and events we will be holding in aid of her and the family.
Thank you for taking the time to read this and of course we are grateful for any donations big or small that are made. This is a life changing time for Verity & her family and we want to show them that they are not in this alone.
We are raising funds to help Verity, Adam and their two sons Olly and Jack spend as much precious time as they can with their new daughter and little sister. These funds will be used to provide transport to and from the hospital, for visits and appointments whilst Daisy-Jean stays on the Neo-natal ward at Leeds General Infirmary. It will also help to provide support to the family during the next coming days, weeks or months as well as to adapt their house in hope of being able to bring their baby girl home and care for her there with any specialist equipment needed. Maybe even a family day out to make as many memories as possible and bond with her while they can.
Although the outlook for Daisy-Jean is not promising, She is currently 6 days old, gaining weight (50gms so far!) and free from all the wires and monitors she was previously covered in. She is fighting as much as she can and we are enjoying every day we have with her despite the devastating decision to not operate on her heart made by the medical team. She is not giving up easily!
Verity & Adam have a small support system made up of close friends but very little family, Which is why we are reaching out to the community for as much help as possible to make this heart breaking situation less stressful where we can. As Verity is now on maternity leave and with the baby, Adam is caring for their two boys. Financially things are not easy with very little income and costs are high with daily trips to and from the hospital on public transport for the family as well as future costs rising in preparation for the end of Daisy-Jeans journey. We would love to help Verity & Adam be able to give their daughter a special send off when that unfortunate day eventually comes as any family should be able to.
We will aim to be updating this page as often as we can with any news, progress and pictures of Daisy-Jean's story alongside all the fundraisers and events we will be holding in aid of her and the family.
Thank you for taking the time to read this and of course we are grateful for any donations big or small that are made. This is a life changing time for Verity & her family and we want to show them that they are not in this alone.
Fundraising team (3)
Kim Clapham
Organizer
Danielle Victoria
Team member
Rosy Webster
Team member
