John’s Hero Story

A Mother’s said, “Imagine my excitement as my due date grew near; anticipating the delight of my firstborn child; of sharing the joy with parents and other family members.  The miracle day arrived and we named our little miracle John.

Within minutes, however, the doctor announced that there was a problem, John had a serious heart problem.

Thus, began our journey by emergency ambulance to the IWK Children’s Hospital in Halifax.  On arrival, he was prepped for immediate surgery; wheeled into the OR; where he endured several hours of professional intervention to repair the problem.

All the while, we sat, waited and worried, helpless to influence the outcome.

Finally, the lead surgeon came into the waiting room.  Smiling, he tells us that this first operation was a success and baby John is fine.  He said at least one or possibly two more operations would be necessary in the near future, but despite the trauma to such a tiny body and a long period of convalescence, the surgeon assured me the long-term prognosis was positive.”

When this mother tells her this, you may ask why did baby John end up at IWK instead of staying in a New Brunswick hospital?  Some time ago Canadian decision makers concluded that we, as a society, to reap maximum benefit for our children’s health care, treatment would be centralized in major centres.  Centralization for children with serious illness in the Maritimes means the IWK Children’s Hospital in Halifax.

Concentration of childhood treatment in this manner allows families to access the very best doctors, nurses, social workers and medical equipment possible, all in one location.  We felt that, as a nation, we could not afford to make every hospital everything to everyone as it would dilute health care and maybe even bankrupt the system.

The Government provides free Medicare and it is a marvelous system, one we should all be proud of.

So, people ask, if the treatment is free, why do we need a Sick Children’s Fund?  If you live in New Brunswick and your little hero is being treated in Halifax, to be at their hero’s side, parents are faced with travel; travel for diagnosis; travel during intervention; travel during convalescence, travel for follow up visits. This travel is on the family’s dime and for many this dime is actually thousands of dollars.

For example:

Baby John remained at IWK for over three months before he could go home.

For a child newly diagnosed with ALL (Leukemia), that child will face 2.5 to 3 years of kemo treatment at IWK beginning at one-month intervals.

Some children have had to spend the first year two years of their life as patients at IWK .

And not all children can be treated at IWK.  For children requiring stem cell transplants they usually go to the Toronto Sick Kids Hospital for up to 6 weeks, then up to another 6 weeks at IWK in isolation.

And there are rare diseases that must be treated elsewhere.  These heroes can be sent to places like North Caroline, Montreal, Louisiana, NYC, to wherever the treatment exists.

Day trips to IWK are numerous for treatment, with some people traveling monthly.

The Province covers practically none of this type of expense.

Add to this the possibility of medical equipment and prescription drug needs and you can see the financial burden is a reality.

The Lions Sick Children’s Fund was founded on the premise that no parent should be denied the opportunity to be at their sick child’s side during their illness for financial reasons.  Thus, our Mission.

To meet this mission, the Fund is an incorporated, registered, non-profit charity managed by a 14-member Board of Directors.  The Board sets policy and oversees a Director of Operations and a four-member screening committee.  We are an all-volunteer organization.  We have no salary or personal expense overhead.  The Board directs operations via written policy to ensure consistency and fairness in helping client families.

We assist families dealing with any illness in Albert, Westmorland and Kent Counties.  And when finances permit, we assist families throughout the Province.  We get our referrals from medical and other caring professionals.

Fund has existed for 26 years but really took flight in March of 2001.  Since 2001 the Fund has assisted numerous families with much needed financial assistance.

As mentioned earlier, our main help involves travel but our program can assist with the purchase of medical equipment, diabetic test strips, some prescription drugs, and special foods.

One of our features as a fund is our ability to respond quickly.  Once we have been advised by a medical professional worker that a child is being sent to IWK by emergency ambulance and the parents must follow by car but have no money.  We can have cash in their hands before they depart.

We have no means test for families requesting assistance as we believe whatever your economic situation a seriously ill child will change that situation.  Often one parent must quit work, sometimes both, and their personal expenses will continue.

Returning a moment to baby John.  A good news story.  Doctors now consider this little hero hale and hardy.  Baby John’s loving parents are thankful to IWK and its professional staff, as they believe that the concentrated skills sets available to them saved John’s life.

They added, however, “The stress of dealing with your child’s illness is huge.  To also have to worry about finances, possibly even losing your house, added unimaginable layers of stress.  Nobody budgets for this kind of event.  The financial aid we received allowed us to put our attention to where it was needed, on our child, our little hero.”

To whoever hears or reads this presentation what more can I say except that, “Now you know why the Fund exists.”  On behalf of families needing financial assistance, thank you.