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You should join the SDA because the SDA can give help and guidance. It’s like insurance for your job. Peace of mind with the SDA.  


I think the question should be this:  Why should somebody not join the SDA? That list would be short.  


The SDA organisers are always there to help, If I have a question no matter how important or unimportant I think its is, I just call them and they help me...It's that simple!  


With the upcoming EBA negotiations it's great to have someone pushing our company for better conditions in my workplace.  


Alex's Journey

Go Back
  • 12th February 2015

Our DC Warehouse Organiser, Ben Langmaid, was recently approached by SDA Member Rob Watson. He told us of his son's battle with a rare life threatening disease. We asked Rob to tell us about their journey and the struggles they as a family and a father have had to face so that we could share with our members. Here's what he has to say:

Thank you for taking an interest in helping Rob & Shelley Watson and our family, with the path that our son Alex is on with regards to his Rare disease Chronic Granulomatous Disease.  This disease comes with a life threatening notice.  Without a bone marrow transplant our son’s chance of survival is uncertain. In November 2013 we went in to hospital for a transplant starting a 3 month journey in isolation to survive. Around Christmas Eve we were advised that the transplant had failed which meant one thing a (rainy day harvest) the old marrow had to get placed back into the body with the disease back in his body and leaving isolation after two and a half to three months in, with the fear the disease may get aggressive hangs over our heads quite heavily.

In July we called to say we were coming in to the hospital, as Alex asked to be seen by a doctor,  When your child tells you they want to see a doctor you know he is in pain! We went in and did a 7 day stint for Gastroenteritis from here we were advised that the disease has gotten worse, our greatest fears have been realised. With consistent meds and check ups Alex is a bubble boy or cotton wooled child, two indiscretions same meaning of path.

Our Lifestyle as a bubble child
Alex and his older brother don't know any different as we have learnt to adapt to our conditions,  As parents you learn to speak up with confidence and observation of surroundings from people smoking at the front of shopping centre entrances to people serving you who are sick and asking them to move away so Alex can pass or getting another person to serve you, with food opening up a new box to reduce the potential of getting sick, to ask shops if you can walk through there premises to avoid passive smoking is another way to keep well.

To observe your environment 
With the best intentions restricts life style for the whole family, with winter we spend an extreme amount of time indoors with shopping centres, hardware stores and community halls being safe.  With outdoor activity pending on weather, smoke and rain.  With regards to Schooling we are going to home as school classrooms increase the potential of infection and that environment will dramatically reduce our son's survival chances. This is something we have to be considerate of others and there family needs,  even going to a hospital we go into isolation not general population as airborne germs become a fear and medical staff are quite aware of it.

Maturity of a bubble child
The term being Adult sized refers to being around Adults a large percentage of time making his vocabulary more advanced then most children of his age,  and making friends is another story. When we go to church he gets to play with kids there unless their parents or friends tell us they have a sore throat, sniffle or cold and we keep away. 

The Present and the Future
The Friday before Fathers day we were both called into Hospital to be given an update. It was now that we were advised of yet another nightmare,  Alex’s body had created a defence system which makes transplant  inappropriate at this time,  to explain this in layman's terms when a normal body gets sick it fights off infection with fists and kicks,  with the way Alex’s its got an immune system that attacks every thing with weapons of lethal intent .  so how do we approach this?  After allowing emotions to transpire you either make or break.

At present how long do we have to live, an unknown answer as until we get sick we don't know,  life expectancy unknown until we get sick. what are our options  first learn to live with disease and pray,  the second is called genetic therapy.  Genetic therapy is a human trial with drugs making recipients sick but cannot determine the out come,  it may Kill him,  it may do nothing or it may cure him.  another option is a haploidentical transplant where they kill off some of the bad cells but may kill off twice as many good cells,  ladies and gentlemen regardless of options Alex’s will get sick extremely sick physically how long can can he take such treatment WE DON”T KNOW,  how long can he last we don't know,  again what are our options to choose life or death regardless of what ever actions we take the final decisions comes down to us as parents,  what is right and what is wrong, we will have to make that call on the day.

At present we do meds three times  a day plus night feed and visit the hospital minimum once a fortnight pending on situations and circumstances plus monitoring. We don't have one doctor we have a team of dedicated professionals who chat as a team before anything is done,  we ask the doctors if they have anyone coming up for exams so they can  use us as a study,  if people don't offer in our eyes our junior doctors will never have the opportunity become more experienced.

A Parents Journey:
To support, learn and Advocate where required,  The hardest thing to do as parents is to Let go and relinquish responsibility into the hands of others,  this may sound easy but in retrospect this is harder then it looks but the outcome is blended because you build a friendship where trust is the winner and respect is beautiful. We aren't the teachers here our kids are and bonds are tightened. What is our loss? our attention for each other as we unite to care for our loved ones. What makes us unique to reduce conflict and confusion,  Misinterpretation is the key to conflict, 

The Future: 
To raise awareness for BONE MARROW DONORS  so no family has to walk in our shoes.  We have spent a lot of time making our property enviromentally friendly so Alex has a play ground and toys to stimulate him like every normal child. Parents reality, once you run out of sick leave annual leave and long service leave you still need to care for your loved ones hence financial burden,  this is the time families crumblecaring for a child over bills.  no comments required place your self in our shoes and answer honestly.  the out look is quite bleak.

Helping Others
To raise awareness and ask people to contact the bone marrow registry and register as a bone marrow donor so hopefully we can find a match for our son and if not a match for another child/ adult or loved one Globally. To Register is free  to be selected to save a life priceless.  we are currently in the process of setting up a non for profit organisation to help people to run there own donor drives and educate others from all ages.

 

Education:
To educate people on registering as bone marrow donor’s plus educate people on our disease. Plus by sharing our story we are making a change to our friends and followers on awareness or even asking people to register.  by doing this we are giving today’s medical staff the opportunity to help save a future patient. 

To learn more about our disease visit www.cgdsociety.org

Social Media

Alex’s jacobs fight to survive,

Bone Marrow Awareness Community.

We have set up both pages tell our story to encourage people to register to save a life.

This is our journey may you never walk in our shoes

Yours sincerely,

Rob  Watson 


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Testimonials

You should join the SDA because the SDA can give help and guidance. It’s like insurance for your job. Peace of mind with the SDA.  


I think the question should be this:  Why should somebody not join the SDA? That list would be short.  


The SDA organisers are always there to help, If I have a question no matter how important or unimportant I think its is, I just call them and they help me...It's that simple!  


With the upcoming EBA negotiations it's great to have someone pushing our company for better conditions in my workplace.