Maxxwell's Story

Images Captured by Jenn Di Spirito Photography

 Tiny Light Maxxwell is definitely a charmer. He knows he’s cute and loves getting attention. If this toddler blows you a kiss, that means he really likes you.

Maxx was diagnosed in utero at 18 weeks with heart defects - atrioventricular septal defect  (large hole between the ventricles and atria) and ventricular septal defect, plus a Mitral Valve leak. Then doctors told his parents Cheryl and Tom the amniocentesis confirmed Down syndrome.

Within the first six months of his life, Maxx had three heart surgeries. He finally got to go home from the hospital at 6 months, the day before Father’s Day. Maxx may require more surgery in the future and his parents aren’t sure how Down syndrome will affect his life long-term. They are finding support in the community through various organizations such as the Langley Down Syndrome Resource Group.

Maxx will be 3 years old in January and he is pretty much like any other toddler. He loves music and he even knows how to sign for his favourite things. When he wakes up and goes to sleep, he’s always asking for cookies and milk. “We hope Maxx is accepted for who he is and we hope there will always be someone around who can love, support and take care of him.”

(The Langley Down Syndrome Resource Group meets 7:15pm the last Monday of every month except July, August and December at Christian Life Assembly on 56th Avenue in Langley.)

Story Written by Elaine Yong

Miranda's Story

Images by Jenn Di Spirtio

When you look at Miranda and see her positive attitude, you would never guess the trials she has endured.  Multiple medical diagnoses and life circumstances should have knocked her and her mother, Tamara, down; instead, those same circumstances have created a world of opportunity. 

At birth, Miranda was diagnosed with a Posteromedial Bow in her left tibia and fibula, in addition to a leg length discrepancy. Her leg has been re-shaped and lengthened 7 cm through ten surgeries and an Illizarov Frame. As if that was not enough, Miranda’s dad passed away from a heart attack caused by Familial Hypercholesterolemia (FH) leaving Tamara as a single mom. Since FH is a genetic disorder, Miranda was tested and was found to have the same condition.  When Miranda was in grade six, she developed a kidney stone as a result of Hypercalciuria, a condition that causes excessive calcium excretion.  On the journey to finding out what was making Miranda so sick, she was also diagnosed with Pectus Excavatum (a Latin term meaning hollow chest) and scoliosis (where a person’s spine is curved from side to side).  She is currently awaiting an echocardiography to determine the severity of her newly diagnosed Mitral Valve Prolapse (the displacement of an abnormally thickened mitral valve leaflet into the left atrium during systole). 

Despite her multiple diagnoses, Miranda is fearless and continues to swim, write and enjoys art and school.  Her favorite subjects are Science and English. She has recently signed up for a yoga class with her friends, and is looking forward to it. 

Tamara’s advice to other parents going through the same thing is that even though you expect your child to be perfect and healthy, once you start down another path, you deal with it and it becomes part of your life. Miranda says that she finds it hard when everything seems to happen all at once and her illnesses start to interfere with her normal life.  She would like to let other kids with similar conditions know that it helps to talk to people, be around friends, and stay positive. 

Miranda is an inspiration to her mother because she is actually thankful for her many physical conditions! Because of her long stays in hospitals and exposure to the medical field, Miranda is medically inclined and has built a network of many types of people. “She was recently invited to speak to the nursing students at BCIT … to discuss her experiences and how nurses can have a positive approach towards their pediatric patients,” says Tamara. Perhaps one day, she will even become a pediatrician herself!

Miranda has written a guest blog for us it can be read here