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Most hospitals will have a stem cell transplant coordinator that provides financial guidance, as well as assistance with other needs.

In addition, the Immune Deficiency Foundation has a patient advocate who can answer many questions regarding insurance. Go to, and login or create an account to submit your question through the "Ask IDF" section of your account dashboard.

Some families also pursue fundraising activities, including crowdfunding services online.

Significant costs associated with having a child with SCID include:

  • Hospital stays and treatments associated with HSCT or gene therapy
  • Frequent doctor visits and blood draws
  • Preventative medications
  • Home isolation preparation and maintenance materials such as disposable masks and gloves, carpet and furniture cleaning, cleaning supplies, HVAC filters, and HEPA filtration units
  • Higher-cost health insurance plans to accommodate expanding medical needs