100+ Ways to Help the Duchenne Family
Many extended families and friends really do want to help their Duchenne families, but they just don’t know how. Family, Friends and Duchenne would like to help bridge that gap.
Below are over 100 ways that extended family and friends can help. From equipment to services, friendships, relationships, food, vehicles, academic support, there are many ways to help.
Thank you so much, extended family and friends for your compassion, love and support.
Understanding Duchenne
Learn about Duchenne
- Learn as much as you can about the disease.
- Learn and use terminology associated with Duchenne: mutation, carrier, ambulatory, corticosteroids, non-ambulatory, stretches, orthotics, clinic visit, clinical trial, Special Needs Trust, modifications & accomodations, BiPAP, scoliosis, psychosocial health, rhabdomyolysis, trach, sleep study, palliative care, cough assist, contracture.
- Keep up to date about research in the pipeline.
- Ask the parents about which research will help their particular child.
Raising Awareness
- Get a Duchenne bumper sticker for your car.
- World Rare Disease Day is every February 28. Put it on your calendar and call the family on that day to see how they’re doing.
- World Duchenne Day is every September 7th. Put it on your calendar and call the family on that day as well to see how they’re doing.
The Family Unit
The Individual with Duchenne
- Be a part of their lives.
- Presume competency and be willing to modify situations to include them.
- Love them, even though they may not conform to society’s expectations.
- Listen when they advocate for themselves, even if it is delivered unconventionally.
- Talk about things that they enjoy and remember that they may not reciprocate.
Siblings
- Be in their lives, too.
- Talk to them about their own lives and their own interests.
- Attend their extracurricular activities.
- Offer to stay with the siblings so they don’t have to go to the Duchenne medical appointments.
- Step in as that positive role model in their lives when their parents are occupied with medical issues.
- Offer to spend time with the individual with Duchenne so siblings can get much needed one-on-one time with each parent.
Parents
- Watch the kids regularly so parents can take time for themselves. Give them the opportunity to exercise, see their therapist, psychiatrist, medical appointments, nap, bathe, or take time for themselves to do nothing.
- Offer to watch the kids while parent(s) spend time alone together.
- Check in with the carrier mom about her own health.
- Offer to watch the kids while the carrier mom goes to her own medical appointments.
Daily Life
Household Help
- Do a load of dishes when you visit.
- Do a load of laundry when you visit.
- Have a low carb, low sodium meal delivered to their house occasionally – like fajitas with corn tortillas.
- Offer to watch the pets/house if the family is traveling for clinical trials or annual clinic.
- Ask what items you can pick up for them while you’re out running errands.
Routine Medical Care at Home
- Offer to watch the kids so parents make insurance calls/medical calls/schedule appointments.
- Commit to do daily stretches and breathing stretches regularly.
- Learn how to do the daily stretches so you can help out if the parents are unable to do them.
- Offer to prepare the daily supplements.
- Offer to pick up meds from the pharmacy.
- Offer to go to medical appointments with them, to drive with them and stay in the car, or to Zoom into the appointment with them.
- Offer to watch the kids while parents apply for handicap placard/plates for their car.
Legal Projects
- Offer to stay with the kids while parents tend to the multiple legal projects.
- Offer to watch the kids while the parents sign up for the Medicaid Waiver wait-lists.
- Offer to watch the kids while the parents work on creating the Special Needs Trust for their child with DMD.
- Offer to watch the kids while the parents work on updating their wills.
- Ask to be told when the Trust is established so you can update your own will and leave inheritance or expensive gifts to the Trust instead of the child with DMD.
- Offer to watch the kids while the parents set up the Medical Power of Attorney.
Fundraisers
- Donate to fundraisers when they ask.
- Donate to fundraisers when they don’t ask.
- Volunteer your time and connections to help with the event.
- Help promote the event.
Home Renovations
- Offer to watch the kids while parents sort out plans for having an accessible home.
- Offer to help with the kids when home modifications begin.
- Offer to help if they decide to move.
Socializing
Events
- Ask the DMD family if it’s easier for them to host social events.
- Birthdays can be grief triggers for parents of children with Duchenne and they may need extra support at this time. If there’s a party planned, offer to decorate, clean the house, get the groceries or clean up after. If there’s no party planned, simply call and ask how they’re doing.
- Make snacks that are low sodium, low carb, moderate protein when they visit.
- Buy a Perfect Lift to have at your home to help with transfers.
- Ask how you can make toileting more comfortable at your house for the individual with Duchenne.
- Think of ways to include the individual with Duchenne in activities before they come to your house.
- Make swimming a social activity as often as possible.
- Consider indoor events if gathering during very hot or very cold times of the year.
- If you have one or more steps to enter your house, buy a portable ramp to keep at your home for visits.
School When Ambulatory
- Educate the whole school about Duchenne.
- Keep backpacks off the floor.
- Place his or her desk closest to the exit to avoid tripping hazards.
- Ensure an elevator is available instead of stairs.
- Ensure ramps are available outside to avoid curbs.
- Eliminate thresholds anywhere he or she may go.
- Allow him or her to leave the classroom early to avoid busy hallways.
- For recess, try setting up fun activities on the ground like: a bean bag toss, blowing bubbles, chalk, card games, board games, trading card games, playdough, magnets, imaginary play, kid magazines, rock-paper-scissors.
- Also try a rotating “Buddy System” where classmates take turns being the recess buddy for a week. They can then brainstorm fun ideas together.
School When Non-Ambulatory
- Educate the whole school about Duchenne.
- Ensure there are wheelchair accessible doors throughout the entire school.
- Ensure there is ample space to maneuver between desks in the classrooms.
- Ensure there is wheelchair access to all parts of the school, even to places used infrequently – like a ramp for the school’s stage.
- Ensure there is an emergency plan for fire, weather and shooters.
- Ensure there is a backup plan if the elevator is unusable – like a stair slide.
- Ensure there is an accessible vehicle for field trips and that all the outside activities are accessible as well.
Medical
Clinic Visits
- Find out when their annual or bi-annual clinic date is and make a snack and activity basket for them to take.
- Find out when their annual or bi-annual clinic date is and ask them how it went.
- When they come home from their clinic visits, offer to watch the kids while the parents update the “medical emergencies” binder.
Medical Emergencies
- Offer to watch the kids while the parents create the “medical emergencies” binder.
- Offer to watch the kids while parents put medical information on the medical ID bracelet.
- Offer to watch the kids so parents can update the medical information and medical bracelet after every clinic appointment.
- Ask to keep a copy of the emergency binder and take it with you to the hospital. (The internet can be unreliable at hospitals.)
- Download the PPMD emergency app to access on your phone.
- Offer to watch the siblings.
- Bring snacks and activities.
- Offer to be the point person to keep family and friends up to date.
Clinical Trials
- Watch the kids while parents search for clinical trials on clinicaltrials.gov.
- Offer to accompany them on clinical trials. (Some trials may pay for an extra adult if necessary.)
- Regularly ask how the trial is going.
Grief
Hospice
- Simply be there.
- Make sure the parents and siblings are eating.
- Offer an ear to listen.
- Offer a shoulder to cry on.
- Visit the individual with Duchenne so parents can have a shower, a short nap, coffee, fresh air, or time alone with the siblings.
- Make sure parents are taking care of their own basic needs.
The Funeral and After
- Simply be there.
- Make sure parents and siblings are eating.
- Offer an ear to listen.
- Offer a shoulder to cry on.
- Stay with the siblings so parents can have a shower, a nap, coffee, fresh air, or time alone with their spouse/partner.
- Make sure parents are taking care of their own basic needs.
- Reminisce, tell stories, share funny memories about the loved one with Duchenne.
- Remember his or her birthday and check in with the family annually on that day.
- Remember the day he or she died and check in with the family annually on that day.
- Mention his or her name. Often.