Planning for the Future When You Have a Child With XLH

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by Mary Chapman |

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Caring for a child with X-linked hypophosphatemia (XLH) can be overwhelming. Worrying about what might happen if your child outlives you, or you become disabled, can be stressful. Here are some suggestions to help you start to plan for the future.

Create a plan for the future

Thinking about your finances and making long-term care decisions proactively is important.

Consider a life insurance policy

In the U.S., government programs such as Social Security Disability Insurance and Medicaid will likely provide your child with financial security.

Families also can supplement government resources with their own funds, or through a life insurance policy. Consider consulting with your insurance agent to see if there is a plan that’s right for you and your family.

Make a will

Providing for our loved ones when we die is one of the most compelling reasons to make a will. It’s even more important if your child has a chronic disease since he or she may have specific and perhaps expensive needs that require special consideration.

There are a number of options that can be looked at to ensure that appropriate financial provisions are included for your child and any other family members. You may wish to consult an attorney who specializes in wills and estate planning.

Decide who will be in charge

Give special thought to who will be your child’s guardian or trustee, since that individual will have great duties and responsibilities if you are not there.

Don’t assume that siblings or other relatives will be able to care for the child. Have honest conversations about how much care and support each family member is willing and able to give.

It’s also important to have a backup plan in the event that the named guardian or trustee becomes no longer willing or able to provide the needed care.

If possible, involve your child in the planning process. Your child might be able to tell you if there’s someone he or she wants, or doesn’t want, to take on this important role.

Put legal protections in place

Some government services have income and asset restrictions. A child who is left an inheritance or is the beneficiary of a life insurance policy may inadvertently be ineligible for benefits. In some U.S. states, inheritance taxes may be assessed. It may be wise to consult a lawyer and/or a financial advisor to learn more about how to best protect your child.

Speak with a qualified practitioner

Experts recommend working with organizations that can help you find the professional help you need for inheritance and succession planning. Some prospects include the National Academy of Elder Law Attorneys, the Special Needs Alliance, and The Arc.

Think about where your child will live in the future

It’s important to think about where your child will live and what practical arrangements will need to be in place. Will he or she continue to live at home, or move to a group home? If you’re considering a residential facility, it’s advisable to start searching early because of customary waiting lists.

Contact local agencies

Local agencies or programs, as well as nationally available disability services, can help you plan for your child’s future. There may be programs that can aid with housing and transportation, as well as other services.

Transitions in care into adulthood

One of the greatest and most enduring things you can do for your child is to help him or her live as full and independent a life as possible. This is particularly as your child transitions into adulthood. Here are some strategies to equip children with XLH with skills that promote their independence:

  • Involve your child in his or her care as early as possible, explaining what steps are being taken, and why.
  • Help your child gain knowledge and confidence by teaching him or her early about XLH and the importance of treatment.
  • Because XLH is a progressive disorder, beginning symptom management early can positively affect your child’s long-term health.
  • To help your child get used to interacting with physicians and other healthcare professionals, encourage him or her to ask questions during doctor’s visits.
  • To help your child become organized and remember important information, ask him or her to keep a diary of what is learned during visits with doctors and health care providers.


Last updated: June 19, 2020


XLH News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.