Meet the families of ocean
Chairperson and Trustee
Hello, my name is Rachel and I am Chairperson and Trustee of the Families of Ocean Ward charity. I have been volunteering with the charity since it was a coffee morning meet-up way back in 2009/2010. We became an official charity in 2011.I am a mum to a heart child Hayden who was born in 2007 and Owen (heart healthy) in 2011. Hayden was born with complete heart block but managed ok till he was 20months old when he received his first pacemaker. 6 months later he unfortunately went into congestive heart failure and it was a scary time. However after a lot of hospital visits he became stable and since then has gone from strength to strength. He now has his 3rd pacemaker and will soon be sitting his GCSEs.Since 2013 I have worked with children. I have been in my most recent setting for over 4 years and I am a preschool practitioner.
vice Chairperson and Trustee
Hi, Im mummy to Amie who was born in 2013 with Tricuspid dysplasia, severe tricuspid regurgitation, pulmonary valve stenosis, a large ASD and grossly enlarged right atrium. Amie had her first surgery at 10 months old and her second at 3 and a half years old. She has had her tricuspid valve repaired, pulmonary valve replaced, ASD closed and atrium reduced in size. Amie unfortunately suffered with infective endocarditis twice however is currently doing really well health wise.I joined Families of Ocean Ward as a trustee and volunteer in early 2017 and in 2021 took on the role of Vice Chairperson.
Treasurer and Trustee
Our son Aaron was born in 2001. He was diagnosed antenally at our 20 week scan with Hypo Plastic Left Heart Syndrome. He had his 1st open heart surgery when he was just 4 days old, he then had a further 2 surgeries before he was 5 months old with the Fontan completion just days after his 4th birthday. After numerous Cardiac catheter procedures and a fair amount of medication Aaron is doing so well and transitioned to Adult Cardiology in January 2019, his journey isn't over and it is likely he will need a heart transplant but everyday he remains well is a blessing ❤️
I started coffee mornings for parents on Ocean Ward many years ago which developed into setting up the Families of Ocean Ward charity with a couple of other parents in 2011, I was chairperson for 10 years but handed the baton over to Rachel, I continue to volunteer as a Trustee and Treasurer.
secretary and Trustee
Hi I'm Kate and Mum to Chloe who is now 11 and Thomas who is 14.
I found out at 34 weeks pregnant that Chloe had a heart defect but didn't get her confirmed diagnosis until she was born. She has coarctation of the aorta, congenitally corrected transposition of the great arteries, along with lots of additional smaller defects. She had her first surgery at 5 days old to repair the coarctation of the aorta. Between then and 2 1/2 years old we underwent numerous cardiac catheterisations and MRI in preparation of her major surgery, the double switch. She is now 100% pacemaker reliant and has 3 leaking valves but doing incredibly well.I have been volunteering for the charity since 2014 but have recently become a Trustee and Secretary. Ocean Ward and it's incredible staff saved Chloe's life and I love being able to give something back to them and other families going through a similar experience.
Hi I'm Jackie and I'm mum to Conrad who is now 12. We found out that Conrad had Tetralogy of Fallot at the 5 month scan. He had a BT shunt fitted on Christmas eve (my birthday) and we were in hospital until the 13th January. He had his main surgery early May 2010 and spent nearly 2 months on Ocean Ward. He had a large hole patched, pulmonary artery rebuilt, but his system wasn't recovering, so they decided to do a valve replacement earlier than expected. We left for home at the end of June and everything turned around from that point. We now visit once a year for check ups and have been told that he will need valve replacement when he's around 16. I really wanted to give something back to the ward and everyone who worked so hard to save his life. I joined in with events that were held, but have been officially helping for around 2 years now. I love it and the work that everyone puts in brings so much joy to so many children.