Keelan

Kristen, So sorry it has taken me so long to get this picture to you. Here is a pic of Keelan in his car seat that the MORGAN project provided for us. We love the seat and are so blessed to have it. We have actually gotten a genetic diagnosis on Keelan. At first they clinically diagnosed him with Angelmans Syndrome, but the genetic studies have come back and he actually has a very rare form of Muscular dystrophy called muscle/eye/brain disease. In fact he has such a unique genetic form that has never been documented before. Please send lots of prayers our way for the future and we will certainly keep the MORGAN project in our prayers. Thank you again!

-Melissa Irving-Gass

Zoey

Kristen, I apologize it has taken me this long to get back to you. We had just left town for a visit with my family up north and my husband called saying we received the swing (WOW, was that FAST!) When we got back, we were home for a week and left to visit my husband’s family in Iowa. THANK YOU, THANK YOU, THANK YOU so very much! Zoey actually LOVES it! She will sit quietly, swinging and listening to her music for a good half hour. It really helps for when I have to give my 9 month old son, Noah a bath. We actually ran across your website, when I was doing my usual research of how to help my daughter in any way I possibly can. I really wanted to purchase a special swing for her and it wasn’t affordable to us at this time. So, I researched and found The M.O.R.G.A.N. Project. I actually didn’t decide to ask for help purchasing this swing until my Hospice social worker, Alyssa told me about you guys. Then I figured it was meant, like a God send. We really appreciate this more than you could ever imagine!

Zoey, was born with esophageal atresia, TE fistula, Duodenal Atresia, all which could be surgically fixed. Zoey was developing normal and I stopped working to stay home with her because, her first 12 months of life were connected to a suction machine, changing dressings, lots of medical stuff we had to deal with and many hospital stays. When Zoey was one day shy of 13 months, she was taken in for a routine line change that might have been infected. The doctor placed the line and the nurses immediately hooked the line up to her IV nutrition. My husband was going to stay with her while I went home to take a nap. Two hours later, I got a call and my husband couldn’t talk… He could only say “GET HERE”…”OUR BABY”… When I got to the hospital our baby girl had died for 14 minutes and was deprived of oxygen suffering a severe traumatic brain injury. Her heart had stopped pumping because the sac filled up with fluid from the IV line pierci ng the vein. I kick myself everyday, thinking if I was only there, I might have known something was wrong. Then, I realize, God has a plan for all of us! The doctors told us our baby “suffered brain death”, that she would more than likely NEVER do anything on her own including breathe. I crawled into Zoey’s crib that night and prayed for God to let my baby live! The next morning she opened her eyes and looked at me. A couple days later, she was fighting to get off the ventilator, and today she doesn’t do a whole lot but, God did answer one of my prayers… and that was to let my baby smile and laugh again! This swing definatley helps with the smiling!

I’m sorry for this long letter, tried to make it as brief as I could. Thanks again so so much!!!!!

-Karin and Zoey Young

Ethan

Hi Kristen and The M.O.R.G.A.N. Project, I would like to start off with saying sorry for taking so long to write but with Wisconsin winters and a seven and a half hour drive in good weather, we were finally able to visit my Father to get the stander. Ethan and I would like to thank you so much for the Rifton Mobile Stander. As you can see from the picture, Ethan is non-mobile by himself. He has severe CP and is usually wheelchair bound. He is nonverbal and G-tube fed. This stander has been wonderful for him because he can not only stand up but has learned to use one hand to move himself (and is very proud of himself) which he had never done before. The stander has also helped with some of his medical issues such as using his leg muscles that were so tight that his legs were always bent. They are starting to straighten out nicely which means no painful shots or surgery. As you know, children with special needs are only allowed one mobility item every five years and obviously we chose a wheelchair since it was a necessity. A year and a half ago, we bought him a bronco to stand in but aid over the front and “hung” on the seat and it didn’t help with his curvature of the spine so we donated it to our local lending closet as we do everything he can’t use or outgrows.

As a parent of a child with special needs, there is a constant battle within one’s self over what medical procedures, therapies, and/or equipment are a necessity and what would provide him with a better quality of life. But when you really look at the choices you have, most of the time you have to settle for things that “work” but aren’t what you would chose if money were no option. Your program has made it possible for Ethan to have a piece of equipment that really improves his quality of life, health, and happiness! We can’t thank you enough! Ethan is looking forward to warmer weather so he can go outside and have us chase him down the driveway in his stander. Thank you for making this possible for all of us!

-Lisa and Ethan D’Avignon

Aida and Emma

Dear MORGAN Project, First I want to say how grateful we are. These are so perfect and we have already gotten the girls out of the house and to a few parks several times. I wanted to send you a few pics of the girls in the strollers. Thanks!

-Tiffany Brassard

Sofia

We received the letter indicating that our family had been approved for a M.O.R.G.A.N. Project Quality of Life grant for a mobile sitter for our daughter, Sofia, on Monday. I wanted to thank you for approving us! It was a great surprise to have the chair arrive on Wednesday. The timing is perfect since we are expecting our third child in a few months and this floor sitter will allow us to move Sofia around the house more easily, even by her grandparents who will probably be doing a bit of babysitting. It is also low enough to the floor to encourage her to learn to transfer by herself. And, she and her sister think it is great fun! I found your organization because it came up as a Sponsored Link on Google when I was searching for a Tumble Floors Sitter late last year. The application process was easy and I have found the list of resources that you sent to also be very valuable. We adopted Sofia internationally at the age of 9 months, so do not have any medical history prior to that time. She was diagnosed with bilateral schizencephaly around her first birthday. That means that she has clefts in both side of her brain that impact her development and motor skills.

She is almost 3 and still needs balance support while walking or sitting, but is working hard to improve both. We speak English and Italian at home, but her articulation is not clear, so they are both a bit hard to understand. She is socially and cognitively doing well. She was having seizures late last year and they have been controlled through ACTH, a very high dose steroid. She is a happy kid with a contagious laugh and a bright smile. I have attached 3 photos of Sofia. The first is of Sofia in her new chair, the second is with Sofia and her sister, and the last one is of our whole family. We ran out of smiles and cooperation from the kids before we caught a shot of all of us with Sofia and her chair. Please feel free to use our photos, but we would appreciate just referring to us as Sofia P. and her family, without using our last name. Thank you again for approving us for the grant. Thank you for all that you are doing to improve the quality of the lives of other families!
Kind regards,
Stacy P.

Hannah

Dear Morgan Project, I just wanted to drop you a line to say THANK YOU!!! for helping our family out. It was a huge blessing for our family to attend the 2008 MAGIC Convention. Hannah had the time of her life getting to hang out with her other friends that had similar medical issues. She looked at me and said “see Mom, I am not the only one in the world that has a g-tube” It was a very good thing for her psychologically. She has since stayed in touch with her g-tube buddies and it brings her comfort to know that other kids get poked with needles every day, too. As for me, it was a well needed break after the worst year of my life. I had a great time getting to get together with other families that have similar very chaotic lives as well. Thanks so much for what you did for us! It will not be forgotten and we could not have done it without you!!!! With much love, sincerity and gratitude!

-Alicia and Hannah Jordan

Payten

Payten Chandler received her adaptive stroller, and it is GREAT! She loves it, and so does the family! She has already been invited/included along to a basketball game of which she enjoyed tons – thanks to you! The stroller was better quality than we expected, it fits her so well, moves around so well, we can’t thank you enough. Through your generosity, Payten will be able to be included in outings, this week’s trip to Children’s hospital won’t be such a physical challenge for Mom and Dad, she will be supported properly, without causing problems to her lil’ body, she won’t be limited to twenty minutes, as she was previously to her old rolling device. Thank you so much and God Bless.

-Lynn Kerns

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