Life Hacks for MWS families

Released November 1, 2021

Caregiving Corner

Released November 1, 2021

The MWSF Community Advisory Board would like to share some information about what MWS families can expect after a diagnosis

  • The decision to test children with MWS for COVID-19 is a difficult decision, and there are many factors to take into consideration. It is always best to ask one of your trusted physicians for their advice.
  • Many tests need to be conducted and many different types of healthcare providers need to be involved. Developing a comprehensive care team is vital
    • Metabolism Testing can help determine how medicines and nutrients are being metabolized – most often recommended by a Neurologist
    • A swallowing study might be helpful to identify swallowing issues
  • Many types of therapy may be helpful. These may be recommended or provided by an Occupational Therapist or Physical Therapist
    • Oral aversion therapy
    • Speech therapy
    • Feeding therapy
  • Many children with MWS require extensive bowel and gut management. A Gastroenterologist is a vital member of the care team. Children have varying levels of Hirschsprung’s disease.
  • Augmented communication supports can be extremely helpful. A Speech Therapist usually can help with this
  • Some children with MWS suffer from anxiety and difficulty sleeping
  • It is vital to be working with a Primary Care Physician, Developmental Pediatrician (most often associated with a Children’s hospital), Physiatrist or Pediatrician that is an active part of the care team and that you can trust. This will help in getting the necessary referrals for tests and therapies
  • Many types of durable medical equipment are helpful
    • Wheelchairs
    • Modified Strollers (generally must be referred to as a wheelchair for insurance to pay for it)
    • Augmentative Communication Devices – here is an interesting website about this: https://ebip.vkcsites.org/augmentative-and-alternative-communication/

New Donor Levels

New Donor Levels

We would like to introduce our new levels of giving

Everyone that joins our Sustaining Seas monthly giving program during our 2021 Giving Day Fundraiser will receive a special prize in the mail. They can also enter to win a $50 Amazon gift card.

We will share more about this opportunity during the month of November.

Every dollar makes a difference!

Can’t wait?  Donate now!

Save the Date for our 2021 Giving Day Fundraiser on Tuesday, November 30

GivingTuesday is a global movement designed unleash the power of radical generosity. GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Since then, it has grown into a year-round global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity.

Join the movement and give!

Can’t Wait? Donate now

MWS Family of the Month – the Rowe Family