Hunter’s Surgery and up coming events

Today we are one day shy of three weeks post surgery for Hunter and this morning was the first morning he woke up and played instead of crying. Since the surgery he has had a hard time sleeping. Well, not sleeping itself but waking up in the middle of the night and crying. Last night he woke up once but was able to go back to sleep. Yes he cried but going back to sleep last night and waking in a good mood I am hoping is a sign in the right direction. Other then not mentally being himself he bounced back well physically. He was in his walker about 1 week post op and had good balance a few days after surgery. He will crawl but I really haven’t seen him do it much. The surgery itself went very well. He is fused exactly like Jack from the skull to C5 and C6 with screws into the skull and wire all the way down. It has worked well with Jack and hopefully will do the same with Hunter.

Jack is doing great with his halo. He plays like it isn’t even there. His 6 month scan is July 21st (yes I am counting the days). Then his halo will (hopefully) come off and he will be back in a collar to help rebuild he neck strength. I don’t believe the halo will come off that day. Most likely they will make another appointment the next week to take it off. What is one more week after 6 months?

Some more news if some of you haven’t heard, Matt, some close friends, and I have started a non-profit corporation under the boys name to raise funds to help research a cure and/or treatment for Morqiuo. The Jack and Hunter MacKay Fund Corporation was also just approved by the IRS as a 501(c)3 charity meaning that all donations are tax deductible. So we now have two ways you can give. You can give to the Corporation to help fund a cure and/or treatment and it will tax deductible when you do your annual taxes. You can also give directly to the boys to help pay for medical cost (for instants medical equipment that insurance does not approve) or for fun things for them and the family that we would not normally be able to afford. Since I had the boys I have been out of work and with the intention of going back when all the kids were in school full time. Now since their diagnosis I may never be able to do so because of the extensive doctor appointments, therapies, and hopefully one day ERT (enzyme replacement therapy which is one full day a week, every week, at the hospital for the rest of their lives, unless the doctors committed to Morquio treatment develop a better form of administering the ERT). Please remember with this syndrome the average life span is into their third decade. Many people with Morquio do not live into their 50s. With the ERT a longer life span is promising but because of a short life span I want my boys to experience as much as they can. Your donations to either will help Jack and Hunter. You can see more about donating under the Donate tab.

Also, we are planning events for both ways to donate. Right now Jeff and Heather (Matt’s brother and sister in law) are working on the first annual Jack and Hunter Bike Rally. This event the proceeds will go directly to the boys. The Fund is also working on a possible golf tournament for this summer or fall and a Holiday Craft/Vender fair. When more details are finalize I will tell you all.

As always thank you for your love and support!

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About Alison

Mother of twin boys whom both have morquio syndrome
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