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Oct. 13, 2020

TOPIC: Featured News, Patients & Members, Patient Stories

Quality of Life and Butterfly Wishes

Posted by Jill Pollander

By Jill L. Pollander, RN, MSNDirector of Patient Services, NORD 

 I first met the Juneja family several months ago. It was an amazing telephone conference call (life and work were remote by then)one that was both heartbreaking and heartwarmingI was and am inspired by this family. 

I learned about the Eva Juneja Foundation, which was founded in memory of a beautiful and sweet child named Eva, who was born with Walker-Warburg syndrome. Her parents created the foundation to give hope to other children and families affected by Walker-Warburg syndrome by raising awareness and providing support, education and connections. WWS is a devastating rare disease associated with congenital muscular dystrophy and includes abnormalities of the muscles, brain and eyes. Unfortunately, children with this disease face a shortened life expectancy. 

In navigating life with a rare (and terminally ill) child, the Juneja family often found themselves feeling isolated and lonely. In striving to make Eva’s life rich and full, they endeavored to create special experiences for and with her.   

I’ve been honored to have had several conversations with Fahr and Jamie Juneja since then. In each call they have shared with me the warmth and delight of their daughter Eva, and their heartfelt wish to honor her by assisting families challenged by a Walker-Warburg diagnosis. I heard about music and boat rides and sand between baby toes. The overarching theme of every conversation was about the importance of quality of life and ensuring that Eva’s diagnosis did not define her or her life.  

With all of this in mind, Eva’s Butterfly Wishes for Walker-Warburg Families was created. The Eva Juneja Foundation has provided a generous grant to enable NORD to give eligible WWS diagnosed children an experience designed specifically for the child, one that will enhance his or her quality of life (a butterfly wish) 

Butterfly wishes: 

  • Focus on the child diagnosed with WWS and are consistent with the child’s age and physical and cognitive abilities 
  • Include the diagnosed child’s immediate family 
  • Are not related to medical appointments, diagnostics or treatments

Fahr and Jamie shared with me the sheer delight and giggles Eva experienced on petting and riding a horse with her parents, during a boat ride and at the beach. Experiences like these enhanced Eva’s too short life. These are cherished memories – and the goal of this program is to assist eligible children and their families to create such experiences. NORD is honored to grant butterfly wishes for other WWS families through financial awards that will allow them to make extraordinary memories with their child. 

 Eligibility requirements for the Eva’s Butterfly Wishes for Walker-Warburg Families include:

  1. A confirmed diagnosis of Walker-Warburg syndrome
  2. The child must be a US citizen or permanent resident  
  3. The family must meet financial eligibility criteria 

For more information about Eva’s Butterfly Wishes for Walker-Warburg Families, please contact NORD via email: [email protected] or phone: 877-291-7813.