In her short four years, North Bay’s Sofia Glass has endured more than anyone should ever have to deal with, in an entire lifetime.
Every day is a battle for this little girl who was diagnosed with Rett syndrome, a rare genetic neurological and developmental disorder when she was just two years old. It affects mobility, speech, and creates developmental delays, along with other secondary conditions that can develop over time.
“Sofia has epilepsy which is poorly managed," explained her mom Jordan Lepkan. "She’s very dependent upon her medications. If she doesn’t take them, then she cluster seizes, often resulting in seizures lasting over seven minutes resulting in a 911 call. She also has scoliosis, a mild curvature of the spine, but because she is non-ambulatory (unable to get around without a wheelchair) it will likely develop at a much more rapid pace. She has dystonia, (a movement disorder, causing her muscles to contract involuntarily) acid reflux, and she has breath holding and sporadic breathing patterns and hyperventilating.”
“The diagnosis generally occurs in one in every 10,000 live female births. It’s almost exclusive to girls. Generally, it is terminal within a few hours of birth, because they are so, so severely disabled. Sofia is definitely progressing at a rapid pace and I would say she is more on the severe side the spectrum," Lepkan added.
The little girl who is non-verbal and non-mobile lost all her fine motor skills: purposeful hand movements in June 2016. She is scheduled for surgery at CHEO (Children’s Hospital of Eastern Ontario) in Ottawa this week, at which time she will have a feeding tube inserted into her stomach.
“She’s not gaining weight as she should. She’s four and only weighs 24 pounds. That has been her plateau for the last two years. We really struggle. A lot of the children who have Rett syndrome struggle with texture and getting food into them,” said Lepkan.
“We’ve come to the point now where Sofia is on four medications, three times a day. All of her medications are to be taken with food, so it’s really hard to administer those meds and make sure that she’s not spitting them out, or making herself throw up. Often times when she does seizure, it’s because her body isn’t getting what it needs because it’s so hard to get those medications into her.”
All of which are reasons why the family grabs hold of any opportunity to make good and lasting memories.
Saturday was one such occasion when the family hosted a Make-A-Wish reveal party.
“I self-referred Sofia after speaking with her team here in North Bay, once we gathered that her condition was progressing at a rapid pace. They signed off on it saying, ‘We think it’s a lovely idea. You guys need to go and make memories while you can.’ It was approved within a few weeks through the Make-A-Wish Foundation.”
Jordan and hubby Corey Glass, had to come up with three wishes. They were granted their number one desire, a family Disney cruise from Miami, Florida.
“Corey and I knew the whole time, and we revealed it to our family and friends at our party. I tried to make an anchor using balloons but it didn’t turn out, so I had to make a sign so when we opened up the box, the balloons flew out and I held up a sign that said Disney cruise,” laughed Lepkan.
“It was so fun to do up this whole party with all the children and family members and friends who attended and really celebrate Sofia and the wish we’re being granted,” said Lepkan.
The family is planning to take the trip either this November or December. It will give Sofia time to recover from her surgery.
“Part of our wish was to swim in the ocean and float in the pool on the ship as well. So we have to wait until she’s healed in order to be submerged in water.”
Sofia’s little brother Tomas, turns two in November.
“We just want to give her the best life possible, and we want to make sure we do as many family things with her, so we can get pictures and memories so that when Tomas grows up, he can look back and see Sophia and all of us as a family, and have those pictures and memories to cherish.”
A GoFundMe account has been set up called Sofia’s Voice. The link is also on Sophia’s Voice on Facebook, pinned to the top of the page if people want to make donations.
Almost $21,000 of the $30,000 goal has been raised.
“Originally we had started it for Sofia’s equipment and to do some minor renovations to our home in order to make it more accessible for her. Now we’re using the funds raised for her end of life celebration. So we would like to get organized with all of that planning,” said Lepkan.
“We are so grateful for our family and friends in the community who continue to support us, and people writing positive comments on Facebook. It helps mend the broken pieces of our hearts. It gives us smiles when times are tough.”
