HopeKids Provides Normalcy For Linae & Grant – and Their Family
PHS loves being able to connect with like-minded organizations that help make life easier for the patients we serve. HopeKids is a long-time partner of ours, provides ongoing events and activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions. We look forward to another great year together as we all help take care of the whole family.
While siblings Linae and Grant share a medical diagnosis and a roof over the heads, they are very much their own person in almost all other aspects of their lives. Linae is a bubbly 11 year old who loves doing crafts and writing stories. At 14 years old, Grant enjoys cooking and looks forward to a career as a statistician someday.
“They’re quite opposite in their personalities and daily lives,” says their mom, Kelly.
While their family has spent many years looking for answers to questions related to Linae and Grant’s similar health issues, organizations like HopeKids and PHS have helped to bring normalcy into their lives.
Making sense of symptoms
When Grant was one year old, he had an episode that doctors determined was a stroke and called it a unique incident after they were unable to find a cause. But when he regularly started waking up in the middle of the night due to screaming episodes at two-and-a-half years old, Kelly and her husband Kevin knew something was wrong and visited a neurologist to look for answers. After about two years of evaluation, it was confirmed he was having seizures and they saw improvement with medication.
Within that timeframe, Linae was born and displayed symptoms from the beginning.
“She would fall asleep eating; had no problem falling asleep anywhere,” remembers Kelly. “We thought she was the easiest baby ever, until we realized that this might not be normal. She was too fatigued.”
As Grant was also beginning to display signs of fatigue, Kelly and Kevin hoped Linae would be able to help bring answers for both the kids, and their current diagnosis came by way of excluding other diagnoses until they came to one that matched – mitochondrial disease complex 1 deficiency.
Proactively treating crashes
Until recently, Linae and Grant’s condition has been successfully managed through nutrition, hydration, and respiratory care – avoiding crashes (meaning their bodies run out of energy to function, causing systems to stop working well) that can impact their health quickly. When Linae crashed and ended up in-patient almost three years ago, a doctor wrote a prescription for home infusion on an as-needed basis to get ahead of a potential crash when symptoms begin to show.
“And that’s where PHS came into our lives,” remembers Kelly. “It was so smooth – so easy. Between the staff knowing their jobs and communicating information to us and someone being on call at all time, we were finally proactive instead of reactive – which is a big piece in the puzzle when we deal with so much uncertainty.”
Around the same time that Linae had that crash, she got a vest system and began doing daily nebulizers. Grant had also recently been started on a Bi-PAP due to sleep apnea– meaning a lot of supplies and therapies were being introduced into their lives simultaneously. By finding seamless care through PHS, Kelly inquired about what else was available through PHS and knew she had found a company that would provide the level of care they needed.
A different sort of family
When PHS came into their home, Kelly came to realization that care can happen at home – and can happen without completely disrupting other aspects of their life. Similarly, when they started attending HopeKids events, she was introduced to a world of families in the area who have similar considerations and concerns to hers throughout their everyday life.
“When we go out, we have 2 power chairs, a service dog, and a bag of stuff we have to take with us if Linae has a food reaction,” added Kelly. “But it’s a normal scene at HopeKids. It’s a different experience to be around other families in similar situations – it was a nice shift to realize that there is this world of normal.”
With such a wide range of activities constantly available through HopeKids, there is always something both Grant and Linae are interested in attending – without the concerns of being out and about with their accessories. Whether it’s a high school play or a major sporting event, HopeKids brought Kelly, Kevin, Grant and Linae into their own family of people who understand.
“As much as I fight for inclusion of all people with abilities and disabilities, it’s nice to be around people who get it. And making connections with parents is great. These families get that having a bag of supplies for an emergency is normal,” mentions Kelly. “Like PHS, HopeKids really changed how we looked at things.”
To each their own (hobbies)
Once their virtual school day ends (Grant and Linae spend about 6 hours a day doing school assignments and meeting with teachers electronically from the comfort of their home), each disappear to their own space where they can spend time pursuing the hobbies they enjoy.
Recently, Grant has started cooking – finding a recipe and letting Kelly know what is needed from the store.
“Almost every day, he’s looking for a new recipe to try – and they’re getting more and more complex,” laughs Kelly. “Soon we’re going to need a gourmet kitchen.”
Linae, an aspiring author, goes to her room to work on crafts (you name it, she’s likely tried it) or work on the story she’s writing.
“I want to be an author – I write fiction stories right now,” mentioned Linae. “One story, I wrote for Glenn Robinson (former Timberwolves player) because he asked me to come up with a story about his stuffed animal and my stuffed animal. So I’m going to put it in a nice book and draw the pictures.”
Grant and Linae both have a sense of independence and responsibility that has led to them being the motivated kids they are today – and the support from organizations like HopeKids has helped them enjoy experiences that they might not otherwise have had the opportunity to do. Just this past year, Linae spoke at a golf tournament hosted by HopeKids, and Grant is hoping for an opportunity to attend a Vikings game soon. Skol!
Originally published: January 8, 2016