Taking Care of a Child With SMA

By its very nature, caregiving can take an emotional and physical toll on your health. If your child has spinal muscular atrophy (SMA), you may feel added stress and worry. A SMA diagnosis comes with many unknowns and varying levels of disability.¹

As a parent-caregiver, you handle doctor and therapy visits, bathing and dressing, and other daily routines. But you also provide love and support while nurturing your child’s growth and development. You may feel tired and overwhelmed. Or maybe you are struggling to juggle it all – a full-time job, family time, and your own self-care.¹

Challenges of caregiving

Having a child with SMA puts stress on parent-caregivers and the entire family. Caregivers deal with many complex physical and mental demands of caregiving. Many parents also report financial stress due to care costs, job loss, or a reduced ability to work.^1,2

Studies have found a variety of possible negative impacts on parent-caregivers, including:^1,2

• Reduced quality of life
• Stress and feeling tied down
• Worry over diagnosis
• Sleep problems
• Fatigue and exhaustion
• Less leisure time
• Job loss
• Lack of social support
• Unmet family needs
• Anxiety or depression symptoms

The healthcare system adds stress

Many parent-caregivers feel frustrated when trying to navigate the healthcare system. You may spend a lot of time searching for doctors or figuring out what your insurance covers.^1,2

Caregivers also have concerns about their child’s treatment and future. Depending on where you live, it may be hard to find qualified doctors who know how to treat SMA. It takes time, research, and patience to be an advocate for your child.^1,2

Parents often report a lack of information about the condition and how to best help their child. Specifically, they report a need to:^1,2

• Access healthcare professionals with more education and training
• Access coordinated and integrated care
• Learn how to find psychological and social support
• Learn how to apply for financial assistance and programs
• Connect with school services and disability advocates
• Gain access to equipment, paid care, and supportive care

Tips for coping as parent-caregiver

Here are some tips for looking after yourself while taking care of a child with SMA or another rare disease.^3-8

Get organized

• Keep in contact with doctors, therapists, and school officials.
• Create a safe place to store medical records and documents.
• Put appointment reminders in your phone or on a calendar.
• Use a notebook to keep track of symptoms, concerns, or questions.
• Have a list of medicines and doctors, and your child’s plan of care, ready.

Avoid burnout

• Call on family, friends, or respite workers if you need a break.
• Look into financial, educational, and rehabilitative services.
• Take time to eat a nourishing diet, exercise, and sleep.
• Talk to a therapist, journal, or meditate.
• Find a support group where it is safe to share your experiences.

Develop a family-centered plan

• Nurture your child’s abilities as well as those of your other children.
• Set some short-term and long-term goals for your child and family.
• Include the family in a plan that supports your child with SMA and other children.
• Create normalcy for the family by doing fun activities together.
• Sign up your child for school or other programs that support their social and emotional needs.

Find resources for support

If you have a child with a rare disease, remember that it is okay to ask for help.
Even if you have a supportive spouse, you cannot do it all. Be mindful of your own mental and emotional health. Seek support if you are feeling frustrated, sick, or stressed out.^7,8

In today’s digital age, you can also search for online resources and support groups. Cure SMA can connect you with services in your local area, plus provide updates on research and treatment news.^7,8

Social media groups and websites like SpinalMuscularAtrophy.net provide a sense of community. You can talk to like-minded people and share tips for coping. Remember that you deserve emotional and social support.