How do they do it? In a three-part series, The CJN is profiling three mothers in our community who are thriving despite difficult challenges, providing inspiration, hope and support as they raise children with special needs.
He came out of the womb blue, his chest collapsed inward as he tried to breathe. The baby boy endured countless tests over several months, ultimately diagnosed with a rare genetic disease.
Meet Marcy White. Married to Andrew Trossman, she is the steadfast, devoted mother to 14-year-old son Jacob and 12-year-old twin girls Sierra and Jamie.
Jacob was born with Pelizaeus-Merzbacher disease (PMD).
The author of The Boy Who Can: The Jacob Trossman Story, White enjoyed a career in the investment industry until Jacob was born in 2002.
Since Jacob’s diagnosis at 10 months of age, White has become his advocate. She co-founded a website to educate, and to fund research into finding a treatment.
PMD is a rare, progressive, degenerative central nervous system disorder in which co-ordination, motor abilities and intellectual function deteriorate. A disorder in the same family as multiple sclerosis, PMD is inherited by males as a recessive, X chromosome-linked trait carried by mothers. It is thought to affect approximately 1 out of 100,000 live births worldwide.
Jacob is in a wheelchair and can’t walk, talk or move, but he can smile, laugh and learn. He understands English, Hebrew, French, Tagalog, as well as bits of Spanish and Italian.
Jacob will graduate middle school this year and will attend high school at the Anne and Max Tanenbaum Community Hebrw Academy of Toronto.
When asked how she copes with the challenges, White explained, “You do it because you have to do it. I remember when Jacob was just born. He had spent time in the hospital and I kept saying, ‘I can’t do it. How am I going to do it?’ Jacob’s care is far from typical, but it’s our normal.”
Jacob was discharged from the hospital, at three months of age, in August 2002. He wasn’t hospitalized again until a respiratory infection in May 2014.
That autumn, Jacob went back to the hospital and stayed until the following August.
“I kind of think of it as before he got sick and after he got sick. Even though he was born with a disability, we were managing, in our way, for the first 12 years of his life, and we did what we needed to do: taking Jacob to school, skiing and out in the community. Then he got sick, really sick,” White recalled.
Medically complex and fragile, Jacob now needs nursing care 24 hours a day.
“When he was discharged, it was almost as if he were a different child, in terms of the level of care he needed,” said White.
Before Jacob was hospitalized, he was communicating with a cheek switch that he manoeuvred.
Since his hospitalization, he has not been physically able to use his head in the same way. He is currently working with Holland Bloorview Kids Rehabilitation Hospital on another communication device – an iBlink switch.
“Typically, Jacob communicates with yes-and-no questions. He will blink for yes. His care is very involved, complex, unpredictable. I sleep with one ear open,” said White.
It takes Jacob close to an hour and a half each morning to get his airway clear.
“When I wrote The Boy Who Can, it was to let people know and to show people that Jacob is more than just a boy in a wheelchair. He does use a wheelchair, but he shouldn’t be defined by that. He should be defined by his personality and his interests, his abilities, his laughter – and then you can mention that he also doesn’t speak, and that he can’t walk and is in a wheelchair,” said White.
“[Twin sisters Sierra and Jamie] love Jacob and are very protective and empathetic kids. Growing up with Jacob as their brother, they have an understanding of things that most kids their age don’t,” said White proudly.
The one constant throughout has been Jacob’s attitude. “It is remarkable,” White said. “Despite all his challenges he is happy.”