Let us start by telling you a little bit about our story… In June 2021, our little boy Ezra was referred to Leighton Hospital with health concerns causing difficulty in his breathing. It was firstly suggested that Ezra may have a form of genetical syndrome along with a heart murmur and fluid around his heart. However, upon Ezra having multiple blood tests, bone growth scans and heart and stomach ultrasounds (which are still ongoing) it was established that he had Hypothyroidism (an under-active thyroid) with extremely abnormal levels of Thyroid Hormones. We were made aware just how uncommon this is especially in children of such a young age.
In July 2021, Ezra was discharged from Cardiology with no concerns of a heart murmur or fluid around his heart. We were relieved of this but still extremely concerned of any future findings whilst undergoing even more tests. Leighton Hospital had to contact Alder Hey Children’s Hospital for them to provide a care plan to be followed. Ezra was prescribed medication to manage his abnormal levels. We were told Ezra needed to be closely monitored by a more specialist team, which led to our referral to Alder Hey. Ezra continuously has blood tests taken to manage these levels and this has resulted in his medication being increased several times so far.
It was suggested to us that Ezra was to be referred to Alder Hey as they have more knowledge and understanding in Hypothyroidism within children.
In September 2021, we received very fortunate news that Ezra’s genetic blood test results came back as normal with no syndromes and no genetic abnormalities. In the words of the health professionals “Ezra is a very unique child.”
We are still undergoing regular appointments with Alder Hey and their amazing professionals as Ezra’s Thyroid Hormone levels are still extremely abnormal, it was also found that Ezra’s bone growth is delayed by 3.8 years, so this is still an ongoing journey for us.
Before Ezra’s diagnosis we had never visited Alder Hey Children’s Hospital, we had only ever heard of positive opinions and third-party dealings with them, however, the past several months have been a real eye-opener for us, so much that it made us realise just how incredible Alder Hey Children’s Hospital is. Every cloud has a silver lining and all that…
We wanted to take the step and help make a real change. We decided to create our very own charity ‘R.E.D – Remember Every Dream’ to help raise vital funds for such a wonderful cause. Join us on our journey and let’s spread the word…