CFMB fundraiser for Grace - PULMONARY HYPERTENSION

Every November at CFMB we fundraise for a worthwhile cause. All our members will be coming into the gym on Saturday 24th November for a massive partner workout, fundraising, raffles and BBQ breakfast.

This year our cause is PULMONARY HYPERTENSION. One of our members daughters, Grace (9) suffers from the condition and we would like to raise money to increase the awareness of the condition.

A little bit about Grace.

Our daughter Grace was a born fighter. Her little heart was pumping backwards at birth and she underwent open heart surgery as a newborn.

Grace suffered a cardiac arrest at 10 days old and spent weeks on life support, But she never stopped fighting and we got our girl back.

Life was going well until October last year. We took Grace to see her cardiac specialist as she had been having fainting episodes after very little exertion. Since she had had past heart issues we were worried, and after doing an cardiac echocardiography (heart ultrasound) we were told Grace had a condition called pulmonary hypertension.

We had never heard of this condition and were told it was a serious life limiting condition.

Grace spent the next two weeks in hospital, first to start medication as her heart was under so much pressure and her next collapse could be her last but also to find out if there was a reason she developed this condition. Unfortunately her type is called idiopathic pulmonary hypertension meaning they can’t find a cause genetic or otherwise.

Even though Grace and many other that have PH  don’t look sick, some days just walking around can seem like running a marathon.

What is PH?

Pulmonary hypertension causes the pulmonary arteries to progressively get thicker over time

putting pressure on the right ventricle (the heart). This leads to the lungs not receiving enough  oxygenated blood so they too begin to deteriorate. It affects 1 in every 3 million people.

There is no cure for PH.

There is medication which helps to slow the progression and the first step is oral medication. These oral Meds, which cost about $2500 each month, do not work forever and once they stop working the next step is an IV that is put directly to the heart. This IV has a pump which has to work 24/7, but if it stops working there is only a 10 minute window to seek medical help.

After this IV and pump fails the only option left is a lung transplant or heart and lung transplant of the heart is too damaged.

A child with this condition (like Grace) will usually not last longer than their late teens without a transplant.

We need to raise awareness for this condition and raise money to help to be able to one day find a cure.

Any donation no matter how small will help this cause.

Bank:  ANZ

Branch:  Wagga Wagga

Account name: PHA Australia

BSB: 012823

Account: 495856459

Or visit

http://www.phaaustralia.com/