A Plea For Harley - Pectus Excavatum

This is a plea on behalf of our Son, Harley Smith-Brook. Who has recently been diagnosed with Pectus Excavatum a condition where the breastbone is sunken into the chest, causing pressure on his heart and lungs.

Our aim is to get the life changing (NUSS) procedure he needs, which is no longer funded by NHS England, so he can lead the life of a normal 14 year old teenage boy.

Harley is football mad, whether this be playing FIFA, supporting his team Huddersfield Town, attending every home game, or playing since an early age for Dalton Dynamos, over the years creating a strong circle of friends there.

Last year Harley was reluctant to open up at times about how this was affecting him, becoming more self-conscious about his appearance, and when it came to sports felt like he couldn’t make the same level of effort as his friends. He would often complain about struggling with his breathing leaving him feeling like he was letting his team mates down.

Due to the worsening of his condition and symptoms he reluctantly decided he could not play football this season, and can’t take part in any physical activities without suffering, also missing out on events and time with his close mates.

It is increasingly affecting his education, missing time at school, which is at an important stage with GCSE’s next year, in which he is studying sport.

Even walking causes him to get out of breathe and causes him pain in his chest which can last for hours.

This is all understandably beginning to take its toll on his mental health, having to give up and miss out on day to day activities you’d expect of a teenage boy.

Harleys’ dip in his breastbone has become worse throughout puberty and is putting pressure on his heart and lungs which is causing him many health issues such as chest pain, palpitations, exhaustion and breathlessness.

We have and are still trying all avenues through a number of Doctors appointments, Hospital referrals, PALS and even contacting our local MP but so far only to find out that treatment for this condition is not available through NHS England, although more frustratingly it is in the rest of the United Kingdom.

This has been hard to take as this is clearly not for cosmetic reasons as it is evermore impacting his health, both mental and physical.

As any normal parent would feel, not treating this condition isn't an option for us.

His Pectus Excavatum has worsened over the last 10 weeks following our most recent Doctors appointment and if left untreated could continue to get worse. 

Currently the only option we have is to go private, however this life changing surgery costs £18,500.00.

6 weeks post Op Harley can begin exercising again and after 3 months he can be back playing football and living a normal life, free from pain.

I appreciate money is tight for everybody at the moment but we are only doing what any loving parents’ would do to enable their Son to lead a normal life.

Any donations would be gratefully received, no matter how large or small.

Thank you.