Many extended families and friends want to help their Duchenne families, but they just don’t know how. We would like to help bridge that gap.

Below are over 50 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.

Family Members

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 – 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.