Maddie Smith will be turning seven next month and in those few short years, she’s lived a lifetime. From living with and battling two serious illnesses to raisings funds for others walking in her shoes – Maddie encompasses the very meaning of resilience.

Maddie’s fight started when she was born with cystic fibrosis, a disease that affects the lungs and makes it difficult to breathe. It’s the most common fatal genetic disease affecting children and young adults in Canada, and sadly there is no cure. Her parents, Keri-Lyn and Brian of North Burlington, say they don’t let Maddie’s illness define their family. With two other children and Maddie’s needs, it’s been a challenge given the time it takes to treat her condition and keep her healthy. 

“The whole family goes through it. You’re spending all your nights in hospital and you’re not with your other kids. Maddie takes the brunt of it, but it affects the whole family,” said Keri-Lyn.

Maddie requires physiotherapy twice a day, morning and night, plus nebulizers to break up the mucus in her lungs.

Not long after her fourth birthday, Maddie began to feel unwell. After several visits to doctors and emergency wards, the Smith family was devastated to find Maddie would be facing a second battle – this time, leukemia.

For two and a half years, Maddie endured intense chemotherapy, which came with weight loss and hair loss, all at the vulnerable age of four. On top of that, she battled several bouts of pancreatitis, which required eight hospitalizations.

“It was excruciatingly painful. It took her out,” says Keri-Lyn. “But Maddie is a tough cookie and she has rolled with the punches.” Keri-Lyn also says Maddie has wanted to know everything about her illness, to the point where she now wants to become a teaching nurse.   

After two and a half years and a heroic fight, Maddie is cancer free, lifting a huge weight from the family’s shoulders.

“This summer has been an opportunity for her to truly be a kid again and play with siblings and do kid things,” says Keri-Lyn, who was off work the last three years to focus on Maddie.

Despite her illnesses, Maddie still plays soccer, rides her bike, and jumps on the backyard trampoline. She’s also been engaged in many community events.

For Maddie’s fifth birthday, the family held a blood drive with the goal of getting 55 units donated. Instead, more than 250 units were collected. Then there’s the Mad for Maddie street party, an event the family has organized every July for the past three years to raise funds for the Children’s Wish Foundation and CF Canada. Last year’s goal was $10,000 and they raised more than $20,000.

At the most recent street party, which included the Burlington Teen Tour Band, they raised another $10,000.

The inspiration to give back came from the kindness of the community. When Brian needed to take time off work to be with Maddie, people stepped forward and donated cash as well as meals. Some even volunteered to clean their house.

“People stepped up in ways we never expected. It was so empowering and we felt like we had to spread the love,” said Keri-Lyn.

Have all of their fundraising efforts made a difference? They like to think so. When Maddie was first diagnosed, the life expectancy in Canada for a child born with CF was 30 years old. Today it’s 54.

“It’s great to think there’s a high survival rate but there’s still so much that needs to be done,” said Keri-Lyn, adding that less than four percent of cancer research funding goes to childhood cancer. “We have these kids who are clearly needing support which is why we’re always trying to bring awareness to childhood cancer.”

And when it comes to Maddie, she’s always stayed positive.

“Everyone has been so nice to me,” said Maddie. “It made me feel like I wasn’t the only one fighting and that everyone else was fighting along with me, too.”

by Denise Davy

Local Link

Mad for Maddie
facebook.com/Mad for Maddie

Grief in the wake of the death of a family member can be a difficult time of change and uncertainty for children and their families. Often isolating, grief needs time, space, and connections to others so that children and families can begin rebuilding their lives. The Lighthouse for Grieving Children is such a place, such a community.

Lighthouse was started 20 years ago in Oakville by Jo Fallon. Having lost her own mother as a child, she knew the need for an environment where children could come together to talk about their grief.  Jo says, “Twenty years ago there was the commitment to the knowledge that grief, being a natural and healthy reaction to loss, requires a non-judgmental, safe environment to be digested into our being”, and she talks about our need “to become comfortable with the uncomfortable”.   Talking specifically about Lighthouse, Jo says, “our community has embraced and created a Lighthouse that shines brightly and is now acknowledged as a leader in its field across Canada”.

Lighthouse is run by a small team, with just five full-time staff, a number of contract workers, and an amazing, dedicated volunteer force. As Jo says, where Lighthouse is now “is the result of the true grit and openness of so many volunteers, staff, Board Members and supporters… without each one of them we wouldn’t be celebrating 20 years”.

Each week, group sessions are held Monday-Thursday and children and teens attend every second week.  They can start at any point throughout the year and come to sessions for as long as they need to – some for 6 months, others for a number of years.  The children range in age from 3 to 19 and there is a concurrent parent group for the parents of those children.  The sessions have an open forum discussion, art activities, some age-appropriate break out time from play time through to music and even the padded ‘Volcano Room’, complete with a punchbag.

The services that Lighthouse provides are free.  Each year, 350 families benefit, at a cost of $1,700 per participant.  There is a strong fundraising ethos well supported by the community to raise funds to cover these costs: annually a 5km Run 4 Lighthouse (with 1000 participants!), the Power of 10 cycling event, and the pre-Christmas Bring & Buy sale amongst many others.  This year, as Lighthouse celebrates 20 years, a 20 for 20 fundraising initiative was launched asking anyone and everyone to host an event, big or small, to help raise funds for Lighthouse: from bake sales, poker nights, lemonade stands, neighbourhood BBQs, every little bit helps!  The first few events are now underway with the hopes of many more to come throughout the 20th year!

Thousands of families have benefitted from the services that Lighthouse provides.  “Without this place, I would be lost, I would be floundering, I wouldn’t know what to do to support my kids. They are my number one concern and I feel like Lighthouse is the safety net. When something is going on, we can turn to the Lighthouse, we have people we can talk to, books we can read, other resources that are available. If there was no Lighthouse, it would be a lot tougher trying to normalize things without having some proof that you aren’t the only one,” commented one family.

At The Lighthouse, families find and create a community of understanding, stability and support during a very difficult time.

Congratulations from all of us at Look Local for your achievements over the last 20 years.

The Run for Lighthouse is taking place Saturday June 1st at Lion’s Valley Park. Every individual who raises $25 or more is eligible for a voucher from Film.ca while larger fundraising amounts make individuals eligible to win a Royal Caribbean Cruise courtesy of Expedia or a ‘Fill a Theatre’ experience by Film.ca   

by  Anneliese Lawton

Local Link

The Lighthouse for Grieving Children
Grievingchildrenlighthouse.org