From the Windham Independent dated 04/06/12. This article was a whole page!!!
When Jon Mullaly, a Paramedic, and wife Kira, a Quality Assurance Engineer, bought their home on a quiet cul-de-sac in Windham 6 years ago, they envisioned this as their “forever” home. What was unexpected was the series of complications that would arise over the next few years.
Two years ago, on October 6th, 2010, their second oldest son, Connor, 4, was diagnosed with Duchenne Muscular Dystrophy. They noticed something was amiss as Connor seemed to be suffering from frequent falls. At the same time Kira was pregnant with Keely and Jon was undergoing his own battle with cancer. After series of chemo, Jon is now in remission. Connor on the other hand is in a life-long battle to lead as normal a life as possible with his diagnosis.
Duchenne Muscular Dystrophy is a catastrophic, progressive muscle wasting disease that affects one in 3500 boys. It robs the child of their ability to walk, breath, eat and speak, yet it leaves their minds unaffected. Eventually it takes their life, often by age 20.
Mom Kira explaines, “The prognosis for Connor is that he will be in a wheelchair between 10-12 and heart complications will end his life in his 20s. So much is still a mystery.” Connor also has a small hole in his heart. Last week he as his Echo and EKG and the family is awaiting the result hoping he will not need surgery and will outgrow the small hole.
With the support of family and friends, they have established a Special Needs Trust Fund “Connor’s Crusaders,” for the future purchase of a van and home modifications. The fund can only with withdrawn under very specific circumstances such as a wheelchair purchase, home and van modifications and travel expenses.
Kira said “It amazes us the cost of things. To redo a doorway is over $500. One doorway! Insurance covers $750 of putting a wheelchair ramp in. We’d be lucky to find one for $1000 second hand from what I hear. It’s just amazing. So we are trying to plan.”
While they would love to stay in their current home and love their neighborhood, the reality is that they have 13 steps to get to their living area and 14 steps to carry Connor to his bedroom. While they are able to carry him at the present time, as he grows the task would be impossible.
Another major concern is with finances. Kira said, “We love it here and hope to stay for a while, however we are having mortgage difficulties, due to Connor’s therapy needs. If nothing else, we’d love to find a rental house big enough for our family, preferably with limited stairs.” They have four children, Liam, 6 who attends Golden Brook Kindergarten, Connor, who attends the Windham Special Ed Preschool; Declan 2 ½ and Keely, 1.
Kira has nothing but kind words for all that continue to assist Connor with his cognitive, sensory and physical issues including his preschool teachers Marguerite Thompkins, and Christine Dileo; Katie and Deb at Northeath Rehab; Dr. Brundage from Derry Pediatrics who Kira said, “She’s so amazing and wonderful for the whole family, especially Connor.” Two of the children go to Calico Kids Day Care and Kira said “They have been so amazing!” Connor is due to start steroids next month so the specialists have added a Behavioral Health Psychologist to his plethora of helpers.
Recently a hockey game fundraiser was held to assist Connor as he progresses through the stages of this disease. Kira said, “We are flabbergasted by all the donations especially all the chuck-a-puck prizes. These were friends that bought gifts for the prizes out of the own pockets—just unbelievable. Our friends are just utterly amazing to do this for Connor!” They were also able to deposit a nice sum into “Connor’s Crusaders” Special Needs Trust Fund.
The family would like to run an event in Windham for “Connor’s Crusaders,” but presently are not sure how to approach it and with three small children in diapers, time for handling just the essentials of everyday life are hard to squeeze in.
A collaborative effort that the Mullaly family has been involved in is a new book called, “Saving our Sons and Daughters II” which tells the stories of 80 different Duchenne parents, grandparents and siblings sharing their life-changing stories. Kira contributed to the book and Lori Safford, a former Windham resident and mother of two boys with Duchenne’s, Ben, 16 and Sam, 14, contributed and edited. Connor’s dad Jon also included his own story in the book. You can order at http://www.mistyvanderweele.com/sosd2orderpage?ap_id=kmullaly
The good news to come out of their situation is that most cases of Duchenne’s have the mother as a carrier. In this case, Kira is not a carrier and Connor is in the 32%-tile where his occurrence is a spontaneous genetic mutation. The other boys have been tested and are fine and daughter Keely will not be a carrier.
You can visit “Connor’s Crusaders” on Facebook to help contribute to his Special Need Trust Fund and if you know of a rental for a family of their size with limited steps, the family would like to be contacted. **Contact info removed**
Duchenne’s affects more than 300,000 world-wide.
Mary Ann Horaj
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