Newsletter Jan/Feb 2025

Before the Storm:

• Fill your biggest car with gas (One car was full, but our whole family couldn’t fit in it to evacuate).
• Store bags of ice in coolers (Salvaged food lasted a week with the ice).
• Locate water bottles and clean water containers used for camping for storage
• Obtain comfort foods for family members with Fragile X (Hot dogs, mac n’ cheese cooked on gas burner).
• Gather necessities – matches, batteries, baby wipes, flash lights, lanterns, transistor radio and cash (credit cards require internet and electricity)
• Find a heavy duty bucket to haul a lot of water
• Buy paper plates, cups, napkins and utensils

The radio and extra batteries allowed our son with Fragile X to listen to sports and we lasted for a week at home without power, water and cell/internet service. When we finally left, we couldn’t return for a month and were glad we took some essential supplies to help maintain a routine such as:

• Copy of Power of Attorney (or Guardianship) paperwork
• All medicine bottles (even those that had run out)
• Comfort Items (ipod, radio, basketball, hammock stand)
• Calendar off our wall
• White board to make a daily schedule
• Computer to continue tutoring sessions via Zoom

Many friends in the southeast offered us shelter, but when you have Fragile X, staying in an unfamiliar place for an extended time isn’t really feasible. We recommend that you arrange a familiar place for a long-term stay where family members with Fragile X feel safe and comfortable. Our options were pretty limited, so we ended up driving to Missouri to stay at the family home where we all gather for holidays. It might have been less stressful if we had already designated that as our emergency spot ahead of time.

Medication Refills are Critical

After Kate's family left, one of the biggest difficulties her young adult children experienced was refilling their stimulant prescription. The prescription was due to be refilled the day after the hurricane hit but all the businesses and pharmacies were closed and their medication supply ran out by the time they evacuated. It is very difficult to refill a stimulant medication in a different state by an unknown provider. It is even more difficult for someone with Fragile X who has selective mutism when all the phone lines are down and you can’t reach local physicians or pharmacies.

Kate’s family brought all the available documentation when they left and it still took five days to get the refills. It required walking into four different urgent care clinics to ask for assistance; appointments at a new local medical clinic; two visits with the prescribing provider; and, three trips to the pharmacy. It's important to have your most recent prescription bottle even if it is empty and a copy of your Power of Attorney (or Guardianship) papers.

In the end, the Duke Fragile X clinic was an enormous help. Dr. Salter emailed a brief letter explaining the dire situation in their area of NC and the particular needs of someone with Fragile X in a crisis situation which reassured the new provider in Missouri.

Emergency “Go Bag”

Ali Taylor, another NCFXF board member, recommends an emergency kit for medical issues and a “go bag” for fast moving evacuations. It might include:

• Original bottles of medication - especially controlled substances
• Printed list of diagnosis, medications and various provider names and phone numbers
• List of allergies or other medical conditions
• Extra winter and summer clothing, underwear and blankets

She encourages parents to let kids know the names of their medications and allergies - learn them and carry a copy of this vital information that they can share with others when emergencies arise.

All good lessons learned for Fragile X families when unexpected emergencies interrupt your normal life.