Support for the family - an update about Chase.

Following from the previous story, I wanted to update and thank everyone for the donations made so far! The family have now received a good amount of money to put towards an amazing family holiday where Chase can go mad and really enjoy some mad water sports, a theme park and eat and drink like a king! Thank you to each and every one of you who have donated.

However, I wanted to continue the fund raiser with the intention to firstly, raise more awareness, and secondly help with the support of a new way of living for the family including travelling frequently to London and back to visit Great Ormand Street Hospital, the costs of food, accommodation and any extra childcare needed each time they go, the costs of oxygen therapy for as and when Chase needs it, and hopefully the ability to create some type of bucket list for Chase to be able to do more of the things he would love to do throughout the process giving him some positive experiences during his journey.

Chase has pulmonary hypertension with no known cause. Not many people have this condition and so it is not widely known.

Chases prognosis is poor and although we are having treatment his condition will continue to get worse and will result in a lung transplant.

Some of this treatment is hugely invasive, his next step is to have a Hickman line which is a permanent central line to his heart, where he will be having an infusion attached 24/7 until he has a transplant, which hopefully won’t be for a long time, time enough for more research and treatment. This line can’t get wet and his pump can’t get wet. So you can see how this will impact a teenage boys life. No more water slides, no more sea swimming, he can’t surf, he can’t body board, he can’t kayak, or do anything too ‘active’ the list is endless. Hopefully the medicine eases the pressure on his heart, which is currently severe, and so we won’t need a heart repair or transplant as well.

The condition makes Chase very breathless and his energy levels are normally low, he may need oxygen at some point we don’t know yet, although his condition is improved a little with his meds but will decline. It’s a very progressive condition hence the importance of regular visits to GOSH.

There isn’t a cure for this. He will need new lungs at the minimum, heart and lungs possible.

I’m hoping Chase can spend the rest of his life experiencing things still and the family have some support for this.

Thank you for reading.

Thank you for donating. ❤️