Lilly Kendall is at Great Ormond Street Hospital waiting for a heart transplant and double lung transplant.
Her mum Cath has to travel and stay there and there is very little help or support.
We have been contacted by an anonymous source looking to help Lilly and her Mum. We have verified everything and we have set up a just giving page for Lilly. She is a pupil at the new Ysgol Penrhos School.
We are asking for your help to raise a small amount to make life a little easier for Lilly and her mum. You can donate via the Just Giving Page
Here is Lilly’s story.
Hi, I’m Catherine. I’m a busy Mum of six children and my daughter Lilly, who aspires to be a cardiologist, is my miracle.
When she was just 10 days old , Lilly was diagnosed with Dilated Cardiomyopathy Left Heart Syndrome and Pulmonary Hypertension. We were advised to switch the life support machine off as they were confident that Lilly wouldn’t make it. However, our little fighter shocked everyone and pulled through. To this day, I am proud to say she has beaten all the odds, as doctors believed that Lilly would not make it past 3 years of age, then 7 and now she’s young lady of 10.
Sadly, the last few months things have changed dramatically and on the 9th of August 2017, we went for a routine Echocardiogram and ECG, and these showed significant changes for Lilly.
We were then referred for a cardiac catheterisation in Bristol which revealed that Lilly needed a heart transplant assessment and was sent to Great Ormond Street Hospital for their expert opinion. This was a huge thing for Lilly and for us as a family to accept and come to terms with and it was heart breaking to see my beautiful girl go through this.
Unfortunately, there was worse to come, and following many tests and procedures, Lilly collapsed and needed Cardio Pulmonary Resuscitation (CPR).
We were then told that Lilly’s condition had changed to Restrictive Cardiomyopathy and this meant the pressure was too high for a transplant which was absolutely devastating.
In January 2018, on top of everything we had been through, Lilly was also diagnosed with Interstitial Lung Disease. This is the name for a large group of diseases that inflame or scar the lungs. The inflammation and scarring make it hard for Lilly to get enough oxygen.
This is a very difficult and complex condition that doctors are working on every day to discover more about it.
On the 2nd of May 2018, we were at home and Lilly collapsed once again. We were transferred back to GOSH where Lilly had lots of different tests as an inpatient for nearly 6 weeks and has just been diagnosed with Ventricular Tachycardia.
The team at GOSH and University Hospital of Wales are working hard to find the best way to treat Lilly and she now faces the scary prospect of a Heart and Lung Transplant.
GOSH have told us that they have not done a Heart and Lung Transplant for ten years. Currently, the team are considering a Heart only Transplant and to help, they operated three weeks ago and placed an Atrium Flow Regulator inside Lilly which is basically a hole between the atriums to try and reduce the back pressure. This procedure has only been carried out on five children and we have been told it is not common practice to perform it on children like Lilly.
We are currently back in GOSH and they have lots of tests and procedures planned again for the whole week for Lilly.
Lilly has a huge team of very specialist individuals which include; lung specialists, lung transplant team, heart transplant team, heart cardiologists, pulmonary hypertension team, palliative care team and many more!
Lilly is due to have a operation on Thursday 21st June 2018, and that is an internal ECG monitor which is also known as a ‘reveal’ so they can monitor Lilly very closely when we return to our home in Llanelli, Wales.
Lilly is a very brave and resilient little girl, however being away from her home, family and friends is understandably having an adverse effect, not only on Lilly, but also on myself and my other children that I have to leave regularly in Llanelli.
I will keep you updated, as Lilly is very keen to share her story and educate friends and family on her condition. We are also keen to raise awareness on organ donation.
Thank you very much for taking the time to read our story, we really do appreciate it.