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Learning that your child has spinal muscular atrophy (SMA) can trigger a variety of emotions. The initial shock can be followed by feelings of grief, anger, or hopelessness. These feelings can vary over time.
These are normal responses. Each person will react in their own way in their own time.
If the challenge of caring for your child has you feeling stressed or overwhelmed, you’re not alone. This, too, is normal. It’s a lot to handle. It’s a diagnosis that affects everyone in the family.
With that in mind, here are some resources to help you and your child cope with the practical and emotional challenges of SMA.
One of the first steps you can take is to learn all you can about SMA. Your doctor is the best source of information regarding your child’s diagnosis and prognosis. But there are plenty of other reputable sources of information and education.
The Muscular Dystrophy Association (MDA) has been helping people living with muscular dystrophy and related neuromuscular diseases since 1950. They have a wide range of educational resources, such as:
- About Spinal Muscular Atrophy
- Community Education
- Science and Research
- Search for Clinical Trials
Sign up for their monthly Quest Newsletter for the latest news and information.
Cure SMA is dedicated to providing clear and accurate information about SMA. They can also help you learn more on various subjects, including:
Stay informed by signing up for their biannual Directions Newsletter.
The SMA Foundation was established in 2003 by the parents of a child with SMA. Along with their mission of accelerating the development of new treatments, they offer a wealth of information on SMA, such as:
Spinal Muscular Atrophy UK offers practical advice and guidance to anyone affected by SMA in the United Kingdom. You can learn more here:
These organizations can also help you find related services and support groups.
Support groups are a good way to connect with others who understand what you’re going through. Your doctor may be able to point you toward local groups and resources. Here are some other places you can search for in-person and online support groups:
- Find your local Cure SMA chapter
- Request MDA support group information
- Look for SMA organizations worldwide
- Community networks and voices in the United Kingdom
Support groups vary a lot in how they’re run. If one group isn’t working for you, it’s perfectly acceptable to move on to another. You can also choose to join more than one and surround yourself with support.
Researchers say that supportive care and equipment can improve survival and quality of life in people living with SMA. However, these services can increase the financial burden on families.
The PAN Foundation is a national organization that helps people with health insurance cover out-of-pocket costs. Their Spinal Muscular Atrophy Assistance Fund offers up to $6,500 a year to individuals with SMA, subject to availability and eligibility.
The Gwendolyn Strong Foundation was founded by parents of a child with SMA. Their SMA Community Grant Application ranges from $250 to $2,500. All grant purposes are considered, especially:
- wheelchair repairs and modifications
- home modifications
- accessible vehicles
- assistive technology and other medical equipment
- funeral expenses
The Colorado Fund for Muscular Dystrophy provides grant opportunities of up to $1,000 for equipment and assistive technology devices and services for people living with muscular dystrophy or another type of neuromuscular disorder.
If your child takes the medications Evrysdi, Spinraza, or Zolgensma, you may be eligible for financial assistance programs through each drug’s manufacturer. You can learn more about financial assistance for these medications here:
Caring for your child with SMA is a top priority. But taking the time to prioritize and maintain your own health can help you provide the best possible care to your child.
If possible, get someone to help out while you take time to relax or pursue interests outside of your role as a caregiver.
It can take time to start feeling the benefits of mindfulness and meditation. Try to practice every day for at least 2 to 3 weeks before deciding if it’s helping or not.
Speak with a doctor if you’re feeling stressed out, anxious, or depressed. You may benefit from talk therapy or other mental health counseling. Your doctor can provide a referral to a therapist. You can also search for mental health professionals in your area through:
- The American Psychological Association’s Psychologist Locator
- The American Psychiatric Association’s Find a Psychiatrist
A convenient alternative for talk therapy, you can also try online therapy apps such as:
Finding out your child has SMA can be overwhelming. Taking steps to educate yourself about the condition, connect with others who understand what you’re going through, and prioritize your own physical and mental health can help you prepare for the road ahead.