2017 Just for J 5K North Texas Recipient
This is Malli Rae. She was diagnosed at 34 weeks in utero with Middle Interhemispheric Variant Holoprosencephaly (MIVH). This is where the mid part of the brain does not separate into two hemispheres causing motor skill delays, such as crawling, talking, walking, feeding herself, etc. We were given little hope for her to survive and if she did it would only be for a few hours. Children with Holo are very rare; to be exact she is 1 in 10,000 and not one child is ever the same! May 27th, 2014 came and we welcomed Malli Rae Newman into the world loud and proud!! At three weeks old, we got a call that she also has Partial Trisomy 18 (a replication of the 18th chromosome). Most children that have Trisomy do not survive; she is 1 in 260,000 with her specific type. She is beating the odds there yet again. She is doing all the things the doctors say she wouldn’t do and is a true miracle from God!
Malli Rae has had many obstacles but they are not stopping her or her parents from living life and enjoying this journey with her! What most would call “milestones” we like to call them “inch-stones”! Every inch-stone Malli Rae does is a true blessing from God that we thank HIM for daily! We celebrate BIG in our household (ha-ha). She is now hands and knees crawling, very functional with feeding herself, learning to stand on her own and most recently walking with a walker (it’s a sloooow process but she is trying). She does extensive therapy Tuesday-Saturday. Such as Physical therapy, Speech therapy, Fascial Integrative Therapy, Horse riding therapy and scalpel acupuncture. She also attends a Mother’s Day Out program on Tuesdays and Thursday as well.
Malli Rae loves to be with other children, playing outside, going to the park, listening and dancing to music, playing with her tablet and toys and loves the water, especially bath time!! She has brought a whole new meaning to life for Joey and me. She gives the best hugs and kisses around, but what we love the most is her contagious, beautiful smile!! Joey and I prayed for a pain free and happy child that loves life and God blessed us with just that! Everything else Malli Rae is doing is just an added bonus!! We love this scripture that we find very fitting for our girl,
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well”.
Our family plans to use the proceeds from Just for J to assist with therapies and some home remodel accommodations for Malli Rae. - 2017