Beer! The Crusader's Oktoberfest and Connor's Christmas Concoction

The beer is bottled!

Last week Jon and I brewed beer for Connor's Crusaders and we are bottling next week.  We had a great time (on this very belated 10 year wedding anniversary since May) and even designed our own labels.  Mine came out AWESOME!  The beer Jon chose to brew is Oktoberfest which is a classic stein filler for those looking for a bit more body and flavor (5.5% alcohol per volume).  I chose to brew Pilgrim's Christmas Ale which is a true holiday delight with all the spices of the season in a very hearty brew (7.5% alcohol per volume).

"The Crusader's Oktoberfest":  A good dose of malt, smooth medium body, and a subtle aroma of hops tie it together for this autumn German specialty.  Fill your stein with this one.

Connor's Christmas Concoction

"Connor's Christmas Concoction":  A Mayflower load of extracts and spices combine with a bountiful harvest of grains and hops to make a full bodied, slightly sweet, very spicy holiday brew with an impressive 7.5% alcohol.  Gather your neighbors and friends for this feast . . . they'll be very thankful.

These aren't traditional 6 packs but 22 ounce bottles.  We are giving each 22 ounce bottle for a $10 donation to Connor's Crusaders.  All proceeds will go to Connor's Crusaders Trust Fund to help defray Connor's medical costs.  This is a Trust Fund for Special Needs set up through a lawyer which can only be withdrawn from under very specific circumstances such as medical need, educational need, and van and home modifications to name a few.

Crusader's Oktoberfest

We are really excited about this and of course we are doing "virtual beers" for just donations.  You will get a picture of Connor and a thank you from him for these donations.  You can choose to donate through PayPal (link on the left) or check made out to Connor's Crusaders.  Thank you everyone who is interested!!!

Happy New Year!



Jon and Kira Mullaly

The only thing consistent are his inconsistencies . . .

Connor had a speech and language evaluation today.  We had been waiting for this appointment for 6 month or so and we were looking forward to getting some more answers to his communications issues.  Especially how to help him as we are equally frustrated as he is.  While I was describing the behavior issues that go along with his communication issues and his typical 20 times-a-day request to "eat something" and telling us "I can't talk", I was feeling like this is probably the 20th person that I was explaining Connor to and the Doctor recognized this.  It was refreshing and comforting that we got the recognition that we will not stop seeking help for Connor until we find SOMETHING, ANYTHING that will help him. 

Last night Jon and I discussed what questions we are looking for answers to and what we expect (realizing recently that I, in particular, may have expectations set a little too high usually) and how the Pervasive Developmental Delay has changed how we not only handle Connor but also how we now need to deal with the world.  Our family decisions as to what we do and not do are now centered around what he can "handle" yet we are still guessing since we are still learning and adapting to his needs and limits. 

Something as simple as going to a Tree Lighting in our town, which we were looking forward to as a new family tradition and thought we made all arrangements (napping him and carrying him around so as fatigue was not an issue) became too much for him and we were not prepared for that.  He was not able to tell us what to do that would help him.  We couldn't anticipate that he would be sensory overloaded.  Equally for his brother's birthday party, Connor was not able to even be with the other kids for unwrapping gifts since he had zero self control and wouldn't stop streaming and hitting.  We thought we had prepared him for this event as well explaining repeatedly that this is Declan's party, presents, etc. and what was coming next but this too proved to be too overwhelming for him yet he was not able to tell us how to help him.

So suffice to say I had a lot of eggs in the Speech and Language Evaluation basket since communication seems to be such an issue.  What I learned was that he knows what a taxi and a candle are (believe me, this is big!) but when he tries to put all the words together (grammar, etc.), he has lots of trouble.  And than frustration comes out physically.  For a kid that has no self regulation, this is a huge problem.  So this was a really good appointment explaining where his deficits are and where to work on his skills, but we have a very long road ahead.  We just hope that EVERYTHING becomes easier for him (and for us too).

We are starting ABA therapy (Behavior therapy) in January in our house which we hope will help teach him some better coping mechanisms and strategies.  Amazingly Connor has joined us for dinner for nearly two weeks which has been wonderful.  The last few days he has been telling everyone including siblings, "I like you" which is just so sweet!  We are looking forward to Christmas and attempting to put some things in place which we hope help him cope better with a very exciting day.  Thank you all for your continued support and have a Merry Christmas!  Happy New Year! 

All our love,
Jon, Kira, Liam, Connor, Declan, Keely and Guinness

Two years since DMD . . . are we "normal" yet?

It's been two years today since Connor's confirmed Duchenne Muscular Dystrophy diagnosis.  It has also been three months since his PDD (Autism diagnosis).  There has been good with the bad.  We were able to see Dr. Wong in Cincinnati in September who said that Connor is doing great with Duchenne and "he may be on the milder side of the disease" which was so amazing to hear.  We certainly hope that it does wind up being the case.  It gave us validation that the endless hours of research on Duchenne and what Connor needs is helping!  It took quite a lot to be able to go, not only financially but family-wise.  Thank you Dawn, Kris, Fiona, Sam and Mom.  Watching three of our kids plus a dog is not an easy task.  Kuddos to you.  Do we have a "date" again next year?

To those of you that know of our flight woes at the last minute to get to Cincinnati, Jon and I have decided to not take from Connor's Special Needs Trust Fund.  Instead Jon is working as many overtime shifts as is humanly possible to make up for the cost (going from little sleep to zero sleep).  We just felt that when the time comes for van and home modifications, it was more important having those additional funds then.

This week there was an incredible breakthrough for a potential drug that Connor may be able to get in the future (video:  http://video.cnbc.com/gallery/?video=3000119969&play=1).  It is the equivalent of discovering electricity quite honestly for Duchenne.  Although this "batch" is not for Connor, he would be the next group.  We are hopeful that in the coming years they get a version to help Connor.  For now, we hopefully wait and start considering what Connor may want for Make-A-Wish.

Connor started life-long use of corticosteroids five months ago.  It was rocky at first but it has given him more energy.  The biggest issue for us now is Connor's behavior which we are still working on.  With the PDD diagnosis we have been trying to get additional therapy for him and are finally in the later stages of that process.  Everything takes time.  We are also in the process of medicating him to help with his "rigid" thoughts.  Whatever will keep him from hurting Keely for no good reason is fine with us.

So now two years later I think we are all in a better place.  We are thinking about fundraising ideas locally but haven't made any progress.  For now, if anyone would like to donate to Connor's Special Needs Trust Fund, you can do it through paypal here by clicking on the Donate button on the left.

Thank you everyone for your love and support.  We have been so grateful for the friends and family that have really helped us get through a very difficult time in our lives.  We have even been shocked by donations from people we don't even know.  To all of the supportive people in our lives, we are eternally grateful.

Jon, Kira, Liam, Connor, Declan, and Keely

Event Raises Muscular Dystrophy Awareness

From the Windham Patch:  http://windham.patch.com/articles/neighborhood-event-raises-muscular-dystrophy-awareness

An annual fun run took place on Clarke Farm and Buckhide Road.

June 1, 2012

From Emily Bristol Sinopoli
On Sunday, May 27th, the Clarke Farm/ Buckhide Road neighborhood, held their annual Neighborhood Fun Run! Every year children from the neighborhood gather to run a half mile, mile, or 1.5 mile race together to honor a local child and raise awareness regarding a special need. This year’s event honored not one, but three very special young people who have Duchenne Muscular Dystrophy. The three honorees at this year’s event were Connor Mullaly (4) of Windham and Ben Safford (16) and Sam Safford (14) of Pelham formerly of Windham.
All three boys were at the event and took part in the half mile race. Young Connor did a portion of the race with the assistance of teenager Ben and his power wheel chair. For the remainder of the fun run, Connor ran with the encouragement of Ben and Sam's younger sister, 13 year old Lydia.
Thank you to the many families who participated in the event and made it a success. Duchenne Muscular Dystrophy (DMD) is the most common childhood form of Muscular Dystrophy. Duchenne most often strikes boys. It is very rarely found in girls. DMD is progressive and can be inherited from the mother (as is the case with the Safford family). Or, the genetic defect can be spontaneous in the child (As is the case with the Mullaly family). Duchenne is typically diagnosed between the ages of 2 and 8. Muscle weakness begins in the legs and arms, and progresses over time to the point where power wheelchairs become necessary by age 12, and often earlier.
Teenagers with Duchenne often need tendon releases and scoliosis surgery. Because the heart and lungs are muscles too, people with DMD eventually lose their lives due to respiratory or cardiac failure in their late teens or early twenties. We ask for help to find a cure for this fatal, debilitating disease!
To learn more about Muscular Dystrophy and to support families like the Saffords and Mullalys, you can purchase a book entitled Saving Our Sons and Daughters II in which both families have been profiled. The book was written and compiled from the combined experiences of over 40 families including young people who have the disease, their parents and grandparents. Saving Our Sons and Daughters II can be purchased directly from Lori Safford and Kira Mullaly. You may email either of them at lorisafford@comcast.net or kmullaly@gmail.com.
You can also make a tax deductible donation to help fund Duchenne MD research by donating to the Jett Foundation through Lori Safford who is competing in a triathlon this summer in honor of both her sons. This is an annual fundraising event for her! Last year, Lori's team, "Gals for Cal" raised $43,000, and over the past 3 years they've raised nearly $100,000 to fund Duchenne research! They're hoping to exceed that amount this year and they need YOUR help to do so. If interested, visit: http://jettfoundation.donorpages.com/GalsforCal/lorisafford/.

The starting line.Credit Emily Bristol Sinopoli

And they are off!Credit Emily Bristol Sinopoli

The Race Honorees taking off: (L-R) Sam Safford, Ben Safford and Connor Mullaly (riding on the back of Ben’s power wheelchair).Credit Emily Bristol Sinopoli

6-year-old Liam Mullaly was one of only two kids who completed the 1.5 mile course! He finished with a time of 15:40.Credit Emily Bristol Sinopoli

Honoree, 4-year-old Connor Mullaly, finishes the half mile race with the encouragement of Lydia Safford. (Background: Connor’s 2-year-old brother Declan also completed the race, running with Emily Sinopoli.)Credit Emily Bristol Sinopoli

Wanda Carter places a medal around Connor’s neck at the awards ceremony while proud family and friends look on.Credit Emily Bristol Sinopoli

WINDHAM FAMILY STRUGGLES TO REMAIN IN HOME AFTER SON’S DIAGNOSIS OF DUCHENNE MUSCULAR DYSTROPHY

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