Rare Disease During The Holidays

The holidays can be a difficult time for families affected by terminal rare diseases. Families with a child in all stages of a diagnosis may each be feeling something different. We reached out to our community for their thoughts on the holidays, and this is what they said.

Carole, Becker mom of Ian, 27:

“I can’t speak to feelings as every minute my feelings change based on what affects Ian, period.  So the holidays are no different, every minute I adjust my feelings it seems.

Live each day, hour, minute to its fullest.  Don’t sweep emotions under the rug, face them, and talk about them with your whole family as EVERYONE is affected by a rare disease.  Be honest.  Be hopeful.  Wish on a star EVERY night you can.  Cry and get mad.  Laugh as much as you can, something I find very hard to do as the days go on.

A true acknowledgment of just how difficult it must be to live with an incurable, wasting disease that leaves your loved ones’ brain intact and takes everything from them slowly, just a true and heartfelt “it must be so difficult for you all.”  When my friends complain about how poorly their healthy kid did at a race or what to write on a college essay I remind them of what wonderful problems they have!!”

Kati, Duchenne mom of William, 2:

“For us, this is the first for everything so it’s really raw and emotional. William’s 2nd birthday felt like an f-ed up count down. Like, great only 20 more of these…it’s hard to live in a state of expected grief and grateful for today since he is ok for now.

Time is moving. And all we want a pause. New years is a HUGE reminder that time is ticking along.

Gifts take more time and consideration, like balance boards and trampolines are not good ideas for Duchenne boys. We appreciate it in a BIG way when people get all ability books, toys, and adventures (both for their families and ours).

Checking in, thoughtful texts, making efforts for extra special things like handwritten notes. In holiday updates people could focus less on physical accomplishments (Brett’s soccer team won state!) And focus on who they are (brett shows great patience with his brother).”

Jess and Chris, Duchenne parents of Conner, 12:

“We feel blessed during this holiday season to have help from our families. The boys’ grandparents are homeschooling the boys while we work. This is amazing bc holidays are stressful enough. On the flip side, we can’t gather with our family during the holiday season bc of Conner’s compromised immune system. We are missing out on traditions- not even going to small gatherings. This is so sad for us but what we chose to do to protect our family and others.  We appreciate having Christmas with Conner bc we never know how many Christmas ‘ we will have with him. We treasure these moments. No one knows how much time they really have but with a Duchenne diagnosis, this hits even harder.

We would want people to know how blessed and grateful we are that Conner is walking and doing some simple things and we don’t take this for granted. He’s walking now and throwing a football with us. This is a Christmas miracle. Every time I think about it, I am more and more grateful to God for this.

I would want others to know how important funding is for research so we can end this terrible disease. Christmas time is a perfect time to give. This is the only Christmas gift we want. We won’t stop until we give this gift of life to Conner and all other boys with DMD.”

Linda, Duchenne mom to Terry, 25:

“For me, holidays can have mixed emotions. It means another year has passed. As a mother whose son has Duchenne Muscular Dystrophy, you want time to stand still. Holidays can be stressful and lonely for anyone, but I feel it’s more intense when someone you love very much has a rare disease. Just reaching out to one another can really ease the loneliness that can overcome you. And having an older brother who comes home to be with his family.  May 2021 be a year filled with hope, love, and peace.”

Beth, Duchenne mom to JB, 12:

“I have a feeling of happiness yet more pressure to make each holiday special since I know my son has a limited amount of them.

It is difficult to plan to have time with family and friends, even without covid. When you have a loved one in a power chair you are limited to where you can go. You end up hosting people A LOT!

Just understand that there is an extra layer of planning, stress, and sometimes sadness during the holidays when you have a loved one with a rare disease.”

Jennifer, Duchenne mom of Charlie, 3:

“With a new diagnosis, this holiday has pulled me to look backward when I have consciously tried to look forward and take action since hearing the news. Holiday cards from my son’s earlier years can trigger nostalgia for ‘the good old days” when we were happily ignorant of this huge new presence in our family life. That said, I keep reminding myself of Emily Dickinson’s line, “Forever is composed of nows.’ As in this is it—this is life and we are going to soak in every hour and relish every new memory made.

I think it can be extra helpful for a family coping with a rare disease to get an extra check-in or two. Even beyond the emotional factors, this is a very busy time of year that can add additional stressors to families already dealing with work, children, and disease management itself. Additionally, this time of COVID is limiting opportunities for families to get extra help from extended family and friends.

As I used to say while coping with infertility/pregnancy loss, don’t worry about saying ‘just the right’ thing. We know you cannot, nor are we looking for you to, solve this challenge with words. It’s so much better to keep it simple—’I’m here for you and I love your family’—than say nothing at all.”

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