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Your Child Is Newly Diagnosed With SMA. Now What?

Posted on August 30, 2021
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Anastasia Climan, RDN, CDN

Children can be diagnosed with spinal muscular atrophy (SMA) during infancy, childhood, or adolescence. After learning of their child's diagnosis, it’s normal for parents to feel overwhelmed by the process of finding providers and researching new treatments, along with figuring out how to manage the costs of care. There are many types of SMA, and it can be hard to predict how your child's condition will change your life. Connecting with a supportive community — either locally or virtually — can help you navigate the many challenges of parenting a child with SMA.

One member of mySMAteam shared his family’s story: “I have my beautiful son with SMA. He was born with the disease. Now he is 3 years old. I was the one who discovered my child’s illness at 3 months. I have to work a lot every day to be able to support his needs. His mother has to be with him 24 hours a day because he cannot move by himself."

The member continued: "But I am the luckiest father in the world since I love my son, and I can hug and kiss him every day. Although I arrive home super tired, I always have time for him. He waits for me every afternoon to play. I cannot have another child because of my difficulty in being able to support my home, but I am very happy with my son.”

Although every parent’s experience is unique, hearing from others who can relate can bring hope and remind you that you’re not alone on your journey. Here are some resources to get you started on caring for your child with SMA.

Locating Medical Specialists

Whether your child was diagnosed through routine newborn screening at the hospital or after showing signs of muscle degeneration in their teen years, you will need to build a support team of medical professionals who can care for your child. One of the first medical professionals you encounter may be a pediatric neurologist or another specialist who is familiar with degenerative muscular conditions in children.

Seeking treatment as early as possible will give your child the best possible outcomes. Although it takes time for parents to mentally and emotionally process an SMA diagnosis, the sooner you begin learning about treatment options, the better.

Some of the specialists who may become involved in your child’s care include:

  • Geneticists
  • Neurologists
  • Occupational therapists
  • Physical therapists
  • Pulmonologists
  • Respiratory therapists
  • Social workers
  • Speech and language pathologists

Medical Centers

Finding a medical center that helps coordinate your care by housing multiple health professionals under the same roof can make life easier. You can start by looking for a designated care center through the Muscular Dystrophy Association (MDA) or Cure SMA. Several care centers are located around the United States. If you’re unable to find one near you, follow your child’s pediatrician’s lead or reach out to the largest children’s hospital near you to see what kind of help is available.

Researching Treatment Options

Research on SMA is evolving and new treatments are being studied. There are various ongoing clinical trials that you may consider for your child. The U.S. National Library of Medicine allows you to search by disease through hundreds of thousands of studies happening around the world. Be sure to involve your child’s health care provider when evaluating whether a study is appropriate for your child. Your child’s health care team may also suggest potential clinical trials.

Clinical trials aren’t right for everyone, and there are treatments to target the cause and progression of SMA that might be appropriate for your child. Medications approved by the U.S. Food and Drug Administration (FDA) include:

  • Evrysdi (risdiplam) — An oral medication approved in August 2020 for children with SMA who are at least two months of age
  • Spinraza (nusinersen) — Approved in December 2016 for children and adults; administered as an injection into the fluid surrounding the spinal cord
  • Zolgensma (onasemnogene abeparvovac-xioi) — Approved in May 2019 as a one-time infusion for children under age 2

Physical and Occupation Therapy

As part of your child’s treatment plan, they may receive services to address SMA symptoms and promote healthy childhood development, muscle strength, and motor milestones. Occupational therapy and physical therapy may help reduce muscle weakness and promote independence and quality of life for children with SMA.

Mental Health

Older children and teens should also have access to mental health support to boost resilience and self-esteem as they face the challenges and uncertainties of SMA. Mental health support is also crucial for parents and caregivers, as parenting a child with SMA can be highly stressful. Cure SMA offers a helpful booklet focused on mental health for individuals and families dealing with SMA.

Home Care

Some children with SMA require home care assistance. In-home support services may include help with feeding, bathing, dressing, breathing support, and working with the child on modified chores to build independence. Home care can range from a few hours per week to around the clock based on medical necessity.

Support From Nonprofits and Foundations

Researching treatment options can be a full-time job. However, you don’t have to start from scratch. Organizations that support people with SMA can help you. For example, you can request resources from Cure SMA. The nonprofit offers information packets that explain SMA and provide current research updates. Cure SMA also has age-appropriate care packages that include toys and a list of resources in your state. The MDA offers a hotline that allows you to call or email to access help. The SMA Foundation provides a list of organizations in the United States and internationally that offer resources for people with SMA.

School Resources

Parents of children with SMA often need to advocate for services and support in school. The Individuals with Disabilities Education Act is a credible resource for learning about your child’s rights. Ask to set up a meeting with your child’s school social worker, school nurse, or special education director to make connections and proactively ensure that your child’s needs are being met.

Financial Resources

When your child is first diagnosed with SMA, it’s never too early to start thinking about financial resources. The cost of SMA care can become a significant financial burden. Fortunately, there are strategies for reducing treatment costs, including reaching out to one of several agencies for help. The MDA's resource list for families includes links to organizations that provide equipment assistance and help with pharmaceutical and health insurance costs. Cure SMA also offers a booklet about health insurance options, including Medicaid.

Parents who have children with disabilities can apply for Supplemental Security Income (SSI) and Medicaid. For your child to qualify for SSI, they must meet the disability and income requirements set by the government. If your child qualifies for SSI, there’s a good chance they’ll also qualify for Medicaid. In some cases, your child may qualify for Medicaid without qualifying for SSI. The Children’s Health Insurance Program (CHIP) can bridge the gap for families whose incomes exceed the requirements for other programs but who still need help finding affordable health insurance. The rules and budgets for these programs vary by state, so reach out to your local state agency and ask about Children With Special Health Care Needs programs.

Connecting With Community Support

Community support is essential for families who are dealing with SMA. Because SMA is a rare disease, there’s a good chance you may not already know people who can relate to what you and your family are going through. Meeting others who are also dealing with this condition can provide insight and inspiration for living with SMA.

You could try attending Cure SMA’s annual conference (the largest SMA event in the world) and connecting with one of Cure SMA’s 36 local chapters. Cure SMA also offers several virtual engagement events that are geared toward specific age groups, including children from ages 7 to 12 and teenagers from ages 13 to 17.

The Muscular Dystrophy Association also hosts events and support groups for families. Their summer camp program has been held in person and virtually to allow children with SMA and other related conditions to create memories, develop friendships, and experience a sense of autonomy.

Parent to Parent is an organization that connects parents to others who have children with disabilities. Speaking with an empathetic listener over the phone who has experienced similar circumstances can provide some much-needed compassion and understanding during difficult times.

Talk With Others Who Understand

On mySMAteam, the social network for people with SMA, members come together to ask questions, give advice, and share their stories with others who understand life with spinal muscular atrophy.

Do you have questions or tips about caring for a child with SMA? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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