Take Hope to Disneyland. ❤️

My names Kevin and I couldn't be prouder to tell you all that I am Hopes’ dad.

I have started this fund raiser to help towards the cost of making Hopes’ dream of going to Disneyland come true.

Starting this isn't something I feel great about but Hope deserves nothing but the best and more.

I am currently in the process of organising a fundraiser for when Hope comes home from hospital, to which all profits will be donated to the Royal Brompton Hospital which I have to thank for everything.

Everyone will be welcome and I hope to see you all there.

Hope was diagnosed with heart disease at just 20 weeks old inside the whom. Since the moment she was born she has undergone a collection of surgeries, including 7 major open heart surgery’s. Her first one being straight after birth to correct aortic stenosis.

As dangerous as this was, Hope come out the other side fighting and proved every professional and doctor wrong.

At 11 years old Hope is still fighting and is the most beautiful, caring and strong child that any parent could ever ask for.

After this Hope required another 3 minor corrective procedures on her aorta and in 2013 required open heart surgery again, this time to fix the aorta and her mitral valve also had to be replaced with a prosthetic due to not working sufficiently and this was a call made on the day by surgeons whilst Hope was in theatre.

This is where Hopes journey took a turn. These prosthetic valves, which are supposed to last for years, were not even giving Hope 6 months before they was failing. This meant Hope went into heart failure, at home and in the hospital. Hope is now on her 4th mitral valve replacement. With on going medical appointments keeping an eye on hope, in 2016 it was discovered Hope had subaortic membrane causing obstruction in her heart. This had to be removed and resulted in Hope having complete heart block and being fitted with a pacemaker at just 4 years old.

The Royal Brompton have supported both Hope and everyone around her from the start until now and have performed a series of major heart operations to give her the best blood circulation they can.

This has included an artificial mitral valve, which means she needs to take the blood thinning medication warfarin in addition to these operations. Hope has required keyhole interventions to augment the beneficial effects of the surgery and has had an artificial pacemaker fitted, at just the age of 4, to ensure her heart beats with regularity and at a rate suited to a young child.

We have always been made aware that even with the all the interventions, life expectancy and quality of life may not be optimal.

There are many areas of Hopes’ life affected by her heart condition, the major one being use of the blood thinning medication warfarin, one of many medications Hope has to take daily, which has to be monitored at home via use of a hand held machine. We also have to monitor her diet to ensure food or drinks containing high levels of vitamin K are not eaten in large quantities as these can affect how warfarin is metabolised. Probably the most taxing part of Hope taking warfarin is the need to monitor and control her activities and to ensure she does not undertake any activities that could lead to accidents that would endanger her health and well-being due to the blood thinning capacity of warfarin.

In 2018 Hope underwent her latest major heart surgery to once again replace her mitral valve. This led to a traumatic time for the whole family when Hope took a serious turn and had a pulmonary hypertensive episode. Pulmonary hypertension is a chronic lung illness which is a byproduct of Hopes condition. She has daily struggles and will be medicated and monitored for the rest of her life. Normal things children like to do like swim, ride a bike, or just run around with her friends Hope finds difficult as she struggles to catch her breath. After plans to take Hope abroad this year it was discovered that she will now require oxygen in the air. This is just another hurdle we have to overcome with Hope as a family.

Hope is attending The Royal Brompton Hospital in Chelsea on 28/07/2023 and will be having surgery on 31/07/2023. On 31st July, Hope, will have a new pacemaker fitted which will hopefully supply Hope with a better heart function.

Despite all of this. Hope will still require further intervention in the future. In areas of her heart which are being monitored closely.

I could continue to write about Hopes condition and how much she has struggled throughout her life but I know Hope wouldn't want the world to think she is anything less than an absolute champion, and that, she certainly is.

I will keep you all updated regarding Hope's journey when both myself and her mum find out about her future upcoming operations.

UPDATE! - 25/07/2023 – Hopes story was published in the local paper but due to miscommunication there are some areas that are incorrect and due to this I have updated both my Facebook post and GoFundMe.