The Ivy Holland Fund organise different fundraising events in aid of Forget Me Not Children’s Hospice, Tiny Tickers and Unique – Rare Chromosome Disorders.
About Ivy Rae
Our daughter, Ivy Rae Holland, was sadly born sleeping on 19th October 2020. Our hearts broke and our lives changed forever that day.
We attended numerous scans during our twenty-eighth week of pregnancy, where Ivy was sadly diagnosed with numerous severe heart defects. These included a Double Outlet Right Ventricle, a Ventricular Septal Defect, Transposed Arteries and Pulmonary Stenosis.
Each of these heart defects can cause life limiting affects, since Ivy was diagnosed with several rare heart defects her life expectancy and quality of life was now not certain. Sadly, Ivy was born sleeping a few days later.
Following some investigations, a month later we were informed that Ivy had been diagnosed with an extremely rare chromosome disorder called 15q24 Microdeletion Syndrome. This disorder currently only affects 1 in 42,000 people & comes with an endless list of life changing symptoms and side effects, some manageable and some extremely severe.
Unfortunately, in Ivy’s case she suffered from a number of the rarest and most severe side effects.
We have had amazing support from family, friends and numerous charities – thank you to everyone who has been part of our journey.
We have launched this fund in memory of our little girl but to also raise awareness & money for three amazing charities very close to our hearts.
These are: Forget Me Not Children’s Hospice, Tiny Tickers and Unique – Rare Chromosome Disorders.
Throughout our ongoing journey we have found comfort with the support from these charities.
Forget Me Not offered their support from the day Ivy was born. They visited us and helped with creating life-long memories in the form of photos, hand & footprints and memory boxes that we can cherish forever. They also offered one-to-one support for us and our other children, along with always being at the end of the phone to answer any questions or just to listen. Even now, months later, they are still in contact to offer bereavement services to our whole family. Forget Me Not offer a huge range of advice and support for so many families with seriously ill children.
Unique were a charity that we found a few months after Ivy was born and it was amazing to know there were other families like us, other families with rare chromosome disorders and in need of support.
Unique have a wide range of knowledge on so many different chromosome disorders which need more recognition, so we found it comforting to learn more about Ivy’s condition and to be able to contact other families for information and support.
Tiny Tickers is a charity dedicated to helping improve the detection, care and treatment of babies with serious heart conditions such as Ivy's.
We will forever be grateful for these charities and we aim to raise money and as much awareness as we can through The Ivy Holland Fund.
For further information about The Forget Me Not Children’s Hospice, Tiny Tickers or Unique – Rare Chromosome Disorders, please visit our Links page.