I will never forget the date – Thursday, October 1, 2009. Just 16 days after welcoming my precious new baby into the world I received a phone call that would change my life.
Within hours my husband and I were sitting with our baby in a hospital room being told my child had a chronic, life shortening illness – cystic fibrosis.
Cystic fibrosis? I had never even heard of it, yet it was a genetic illness that we had unknowingly passed on to our little boy. How could this have happened? I was numb.
The following day we were whisked up to Brisbane’s Royal Children’s Hospital and were welcomed into the world of hospitals, doctors, medications and worry. A worry I had never experienced before and a worry that has never left.
I often feel robbed of the blissful experience of having a newborn. While my friends were basking in the glow of their perfect little babies, the first year of my son’s life was incredibly hard, unnatural and utterly overwhelming.
I always thought I would be a relaxed, carefree mother but cystic fibrosis robbed me of that, just like it has robbed my family of a lot of things. The mental and emotional stresses this disease places on us is enormous and at times it seems unbearable.
Christian is now four and we have experienced many ups and downs with his health but despite his illness, he has a certain spark about him. It’s like he knows he may live a shorter life and he is determined to squeeze every drop out of every day. His zest for life is like nothing I’ve ever seen.
From the outside, he looks like any other healthy little boy but the condition is very deceiving – if you looked at his body on the inside you’d quickly realise just how sick he is.
It is a daily challenge to keep his lungs healthy and infection free. His medical regime is unrelenting, time consuming and often heart breaking.
Just to keep going, Christian takes more than 150 tablets every week. Every day he must inhale expensive medication and he endures hours of chest physiotherapy and air clearance techniques weekly, just to ensure his lungs don’t clog up with sticky, thick mucus.
There are no days off with this cruel, debilitating disease. We can’t stop treatments on Christmas Day or on holidays. It is a stress that has continued day in, day out from his first day of diagnosis.
Last year was the hardest time in my life. Christian fought a chronic lung infection for nine months of the year. During that time we endured a two week hospital admission and around eight months of in-home treatment.
I was giving Christian 10 different medications 20 times per day. I was literally setting alarm clocks to stay on track. In amongst all this I gave birth to my daughter Jasmine, who is thankfully cystic fibrosis free. I look back and wonder how we got through it. I am so lucky to have the love and support of my devoted husband.
Unfortunately, we’ve just learnt this infection has returned so the roller coaster ride continues. We’re now facing four weeks of treatment at home and if that doesn’t clear it, we will be back in hospital for two weeks.
Some of the cruel facts we were first told about cystic fibrosis is that there is no cure and the current average life expectancy is 37. I have days where I feel sorry for me but really, my heart breaks for Christian. This will be his lifelong battle.
We have to expect so much from him, day in, day out, whether it is being compliant with treatments, being brave during hospital stays or watching him run to the toilet to vomit when medications or mucus make his stomach churn. Cystic fibrosis is relentless and sometimes it is just too much for a little boy to bear.
Through the hard days, I am always thankful Christian is living in this era of amazing new advancement. It gives me much needed hope and optimism. The buzz word surrounding Cystic Fibrosis currently is ‘Kalydeco’.
Kalydeco is a miracle drug. Whilst it is not a cure, it is the first drug of its kind to treat the underlying cause of cystic fibrosis, rather than just treating the symptoms. Currently it is used to treat adults and children who are six years or older.
Kalydeco only works for about 4 per cent of the cystic fibrosis population – those who possess a gene called G551D.
Out of the 3000 people in Australia who have CF, Kalydeco will work for about 220 people. And my boy, my little miracle, is one of those people (yes, we are very lucky).
Kalydeco adds an average of 18 years to the life of sufferers and offers a quality of life no cystic fibrosis patient has ever known. But it comes at a huge cost – currently $300,000 per year, making it utterly out of reach for the average Australian.
Imagine knowing that there is a drug that would transform your child’s life but families are simply not able to afford it. It is excruciating.
It will remain out of reach until such time as it is approved on the Pharmaceutical Benefits Scheme (PBS).
At the moment the government has deferred making a decision on Kalydeco, putting some 200 lives in limbo. This decision stresses me to the core.
Although Christian cannot be treated with Kalydeco for another two years, it is crucial that it is fast-tracked onto the PBS immediately.
I need some light at the end of the tunnel, some weight lifted off my shoulders. Knowing it is on the PBS and ready for him when he turns six means everything to me.
Although I and the CF community have written endless letters to the Health Minister and Prime Minister we have yet to receive a response.
I feel totally powerless, voiceless and vulnerable. As a mother I do not want to sit and watch my son’s lung function decline before my eyes when I know there is a drug available that would change his life.
I want my son to live a longer, happier, easier and more rewarding life and Kalydeco can give him that. It needs to be on the PBS, saving Cystic Fibrosis sufferers lives now.
Kalydeco is routinely available in America, United Kingdom and the European Union (yes, even Greece) and it is having amazing, almost miraculous results.
It makes my stomach churn knowing the Australian government is happy to lag behind the rest of the developed world.
Kalydeco would allow my son to experience things he has never known, to break away from his restricted, isolated existence, where routine and structure rules his every day.
In our efforts to avoid catching colds and flus (and anything else that could be harmful to his lungs, including dirt and stagnant water) we are careful everywhere we go.
We miss out on birthday parties, community gatherings, celebrations with family and friends.
Kalydeco needs to be approved now. The G551D Cystic Fibrosis community is desperate for it. Every day that goes by without Kalydeco, irreversible lung damage is occurring.
Simply, my son’s life and the lives of more than 200 others is in the government’s hands. While they defer this decision, these people deteriorate. It is excruciating. How can the Australian government deny them two little pills a day? Deny them the chance of a future? It’s just wrong.
If you would like to help our quest to get access to Kalydeco, please visit our Facebook page YesToKalydeco.
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