Support and Adaptability Drive Robert’s Successful Care Plan at Home
At 22 years old, Robert has lived over four times longer than he was expected to when he was diagnosed with gangliosidosis at 14 months old. Time and time again, he has bounced back from serious illness, reached milestones, and surprised healthcare professionals – and he’s been able to do it at home, just like his parents Joy and Dan have always wanted it to be.
A Grim Outlook
After learning their son was only expected to live to be 3-5 years old, Robert’s parents found themselves quickly adjusting to a new life where they didn’t always know what was ahead.
“We had Robert so young, and found ourselves having to adapt whatever the situation at hand was out of necessity,” remembers Joy. “We were conscious of working together and taking everything as it came – because that was really our only option. We just adapted to each challenge we encountered.”
At 4 years old, Robert became very ill and at that point had a trach and GJ tube placed. But as hospital staff were talking about the potential of hospice care, Robert had different plans – to go home with his parents, and live a life thriving with his family.
PHS started providing oxygen, an oximeter, nebulizer treatments, and more for Robert soon after he was diagnosed and continues to provide respiratory care today.
Finding a Supportive Balance
With three other children at home, Joy often found herself having to juggle where she should be if Robert was admitted to the hospital. The family found an amazing resource in grandparents, aunts and uncles, and juggled roles as caregiver to one child and hockey parent to the others. With an amazing support system in place, goals were reached and Robert continued to amaze everyone with his strength and determination.
Today, Joy and her family still find a balance as their schedule remains active with hockey games for their son and get togethers with their other adult children.
“When we have go to hockey games, he can’t join because he has dysautonomic anemia so he can’t regulate his body temperature. But I take video and photos of the game, and then show them to Robert so he could be involved in his siblings lives too,” said Joy.
Contributors to Success
Since day one of Robert’s medical journey, Joy has attributed a great deal of his success to the team of doctors and health care professionals at Children’s Hospitals and Clinics in St. Paul.
“I don’t think Robert would have lived as long as he has if we hadn’t found that group,” said Joy. “Dr. Kubic has always been right by our side, telling us it will be okay and that they deal with children like Robert on a regular basis. Finding those doctors is truly what has helped Robert live as long as he has today.”
Having jumped through many hoops to get where he is today, Robert and his family have adapted to the situation at home time a time again – another factor Joy attributes his success to.
“It’s hard at the time, but somehow you just get through it,” added Joy.
Since transitioning from an adolescent to an adult, Joy and her husband have worked to adapt Robert’s surroundings and lifestyle to reflect his adult age – a milestone they are happy to be able to do at home. Another milestone Joy looks back on with pride? The day Robert graduated from high school.
Cheering for the Hometown Team
Now that the Twins are back on the diamond, Robert will gill his upcoming months with cheering for the hometown team as their #1 fan.
“My dream is for Robert to meet Joe Mauer,” mentioned Joy. “His room is all Twins, and he watches every single game. I put the schedule up so his nurses can turn the game on during the season.”
For his 18th birthday, one of his nurses wrote to the Twins to invite Joe Mauer to Robert’s party – and while a game prevented the baseball player from attending, Robert did receive a jersey and autographed picture to add to his Twins themed room.
Settling Into a Lifelong Journey
Looking back on their 22 year journey, Joy knows that strong communication, an incredible team of doctors and providers, and family support are the pillars of the happy and healthy life they’ve created with Robert.
“Dr. Kubic has always been a huge support for Dan and me and our family,” mentioned Joy. “He always made everything seem more manageable and lighter than it felt at the time – he has always encouraged us that Robert would get through whatever he was battling, and would push on.”
For parents just beginning their journey with a medically complex child, Joy hopes they see other families with adult children who still need medical care and can find comfort in the fact that many others have walked a similar journey – and have created a normal life that is one all their own, and filled with things they love. Just as they have been able to do with Robert.