Charlotte Palmer’s short journey through life has been a bumpy ride, but in spite of all her pain she still remains a happy little girl with a big smile.
“Today she’s actually having a good day, but she does likes to throw surprises at us. Really though, it’s just so hard to believe. She’s awesome, she’s a happy, bubbly toddler starting to show her independence and wants to do things, which is great,” said mom Christina last week after visiting with her daughter and doctors at B.C. Children’s Hospital. “She’s so strong, I think of all of the hundreds and hundreds, if not thousands, of pokes she’s had in her short lifetime that most people would just be cringing at by now.
“How much does she understand? She’s 16 months so at that age you wouldn’t expect her to figure it all out but she seems to understand that when they come in, she knows what certain people do when they come in with different trays and stuff, she knows, she starts to cry a little bit but then she just kind of resigns herself and knows she just has to lie still and let them do it.”
Charlotte remains under close watch as she continues to struggle with medical issues since her May, 2015 premature birth at 29 weeks, weighing just two pounds. (Read more of the Palmer’s story here: Christmas wish comes true for Naramata family)
Since being discharged last December from the neonatal intensive care unit at B.C. Women’s Hospital, Charlotte has spent only 11 weeks off and on at home with her mother Christina, her father Rob and three-year-old brother Rylan.
Last weekend Charlotte had problems her mom believes may have been related to her gastrointestinal and respiratory issues and by Monday there were still no definite answers.
Recurring issues like this are not uncommon for Charlotte who has had to be rushed back to Vancouver by air ambulance three times since first being released from hospital in December, 2015 — most recently in mid-August.
“Right now we just take it one day at a time otherwise it would just be overwhelming but right now this is our life,” said Christina, who is on leave from her job as an RCMP officer. “It’s hard when there’s not anything to say this is ‘a clear-cut treatment, this is a clear-cut outcome’ of what it’s going to be at this time there is no cure so there’s nothing they can do to say for sure, so just that no knowing is so difficult.”
She added Charlotte’s doctors have identified a gene which causes an autoimmune disease, similar to one found in 11 other children in Japan. However, her medical picture is not specific and her symptoms are more similar to another, similar problem, resulting in somewhat of a guessing game when it comes to treatment. Either way, the medications themselves can result in other serious problems, organ failure and increased cancer risks.
Of the 11 other children with the gene, eight have died before the age of two and doctors in Vancouver are collaborating with those in Japan on Charlotte’s case. Right now Christine spends 14 to 16 hours a day at the hospital before going “home” to Ronald McDonald House for a few hours sleep before returning.
When possible Rob and Rylan head to Vancouver to be with mom and Charlotte but more often than not, family time together is over the telephone or computer screen.
“I’ve become like a virtual parent, on Sunday we’re chatting on the cell phone and Rylan takes Rob’s cell phone and he puts it on the seat beside him in his little tyke’s car to drive me around the yard just so I can be with him,” said Christine. “Or I’ll be video chatting with him and he’ll say, ‘oh no daddy you can go, mom’s watching me’ and I go ‘well, not really.’
“It’s good in a way, but it’s also sad that he has to accept that. I remember this last time when we were getting on the ambulance to go out and meet the air ambulance and Rylan said, ‘well, I guess I’ll see you sometime.’”
Family friend and Rob’s co-worker Judy Burton at the Regional District Okanagan-Similkameen has re-started an earlier GoFundMe campaign to help the Palmers.
“I have re-opened the page for baby Charlotte because who would ever have thought that they would still be struggling just to get a few nights together as a family,” said Burton. “I just know how much it means to them.”
The original $10,000 campaign has been boosted to $20,000 and anyone who can help can go to
gofundme.com/fffaurvg to donate.