Dear friends, family, and compassionate strangers,

I’m reaching out with heavy heart to ask for your support for Joshua, a beautiful 6 year old little boy from Perton, sadly there is a deep sense of urgency. Joshua is a brave and resilient little boy, who is fighting an incredibly rare and life-threatening condition called Idiopathic Pulmonary Arterial Hypertension (IPAH). This disease has severely affected his heart and lungs, and we are now in need of assistance to give him the chance he deserves to make sure he can make as many memories as he possibly can with his family, Simon, Debbie and siblings Jacob (7) and Hollie (5).

As a family this is devastating news that no parent wants to hear, but I’m hoping as a community we can show our love and support to them, and help us make as many of Joshua’s dreams and wishes come true.

IPAH is a rare and progressive condition that causes the blood pressure in the lungs to rise to dangerously high levels, making it extremely difficult for the heart to pump blood effectively. Unfortunately, this disease has no known cause, and no cure exists. It’s a challenging battle for anyone, but especially for a child as young as Joshua. The symptoms have already taken a significant toll on his health, and time is critical.

Simon and Debbie have kindly given me permission to be able to share Joshua’s story below.

Joshua is 6 years old, a huge Spiderman fan, and until recently, he is a vibrant, energetic child who loves football, going to the park with his older brother and little sister, soft play and inflatable theme parks. However, after his diagnosis, everything changed. The constant fatigue, shortness of breath, and near-daily medical appointments have turned our world upside down.

Since September, Joshua has endured numerous doctor’s appointments in an effort to uncover the cause of his unexplained episodes of passing out. We were advised that if another episode should happen again, to go straight to A&E. When another episode occurred, we rushed him to A&E, where he was admitted for a few days. During that time, the doctors decided to involve the specialized Cardiac Team at Birmingham Children’s Hospital to review his echograms. After our appointment at BCH on the 7th March 25, we were told that they would be discussing Joshua’s case further. Just a few days later on the 10th March, we received the news that his case was being escalated, and we would be admitted to Great Ormond Street Hospital for further evaluation.

On the 11th, at 6 a.m., we were transported to Great Ormond Street Hospital. As soon as we checked in, Joshua would begin having observations done and sent down for an echogram, with oxygen tubes to open up the airways. After that, we had the Lung Function test to measure how forcefully he could blow into a tube. After that we moved onto an MRI Scan, a CT Scan, walking tests and multiple blood tests. From the blood tests they tested his BNP levels, normal readings are between 13 and 139, Joshua had a reading of 4040 which can indicate severe heart failure. In those first few days of countless tests, repeated several times to ensure nothing was overlooked. The medical team worked tirelessly to identify the root of the issue, but it wasn’t until much later that Joshua was diagnosed with Idiopathic Pulmonary Arterial Hypertension (IPAH).

A few days before we were set to be discharged, we had a follow-up meeting with the doctors at Great Ormond Street Hospital. They delivered the kind of news that every parent dreads, and it’s something we will never forget. The doctor said, "If you want him with you in 6 to 12 months, we need to start the medication and treatment now." Along with this, we were informed that the next step in Joshua’s treatment would involve the placement of a Hickman Line. We are currently awaiting confirmation of the appointment date for this procedure. During a conversation with the anaesthetist, we were made aware of the higher risks involved in putting someone with IPAH under general anaesthesia. This news has understandably filled us with fear about the upcoming procedure. However, as difficult as it is, we have to place all our trust in the doctors and pray that this procedure will help Joshua on his journey.

The path to finding answers has been challenging and exhausting, but every test and appointment has brought us closer to understanding the struggles Joshua is enduring.

We can't express how much we appreciate your kindness. Your support means the world to us, and we are incredibly grateful for any contribution.