Genetic Testing

I met Brett and Shaunna a little over two years ago when their twin boys, Chance and Rylan were still in the NICU.  We instantly bonded as my twins, 5 year earlier, also suffered from the same rare twin condition in utero called Twin to Twin Transfusion Syndrome (TTTS) as theirs did.  We also found out we had many of the same Doctors here in St. Louis and had both gone to the Fetal Care Center in Cincinnati, Ohio for treatment.  On top of that, their daughter Keegan was entering kindergarten with my boys that fall.   We became best friends immediately as we had so much in common.  I would do anything to help them out and this is where my request to help them comes in.....

Chance and Rylan, who are now two years old not only had a rough go in utero trying to survive, but have hit many bumps along the way since birth.  The boys were born at 32 weeks gestation and had a 7.5 and 9 week stay in the NICU.  Rylan came home equipment free but Chance had to be brought home on a apnea heart monitor.  Shortly after coming home he quit eating and had to be hospitalized numerous times over a 4 month span. They had to put a feeding tube in because he refused all bottles.  He had something called laryngomalacia, which is a congenital softening of the tissues of the larynx (voice box) above the vocal cords.  In most infants it corrects itself and nothing needs to be done, however in Chances case he needed surgery. 

A few months later both boys needed to have surgery for hypospadias and then a week following that tubes put in their ears.  Chance has hearing loss in his left ear. He can only hear 30 decimals or higher in his right ear, more than likely he will need hearing aids of some type in the future.

Both boys have hypotonia (low muscle tone).  Rylan has had issues with his legs since birth. He was pigeon toed and got leg braces before leaving the hospital that he wore for nearly 8 months. He refused to put any weight on his legs till he was about 18 months old. At one point he had to use a stander to force him to bear weight on his legs. 

Then just three months ago they noticed Chances eyes crossing, and he needed surgery to correct it. Two months later Rylan's started to do the same, he has avoided surgery for now but is having to wear glasses. 

The boys have been in therapy since shortly after they were brought home.  Their weeks are filled with OT, PT, and even a nutritionist.  They are in the process of trying to get speech covered as well. They have seen several neurologist who have said it could be anything from a brain disorder to muscular dystrophy or a  metabolic disease.  However, they have all agreed on one thing...they need genetic testing!!  The cost is around $11,000 per kid and insurance won't cover it.

The most recent doctor visit this week has shown a decrease in gross and fine motor skills, increase in drooling, and drooping of the eyes along with several other things.  They are now also both back in orthotics.  They need to get genetic testing done now so they know the best way to help them.  They are being sent to get evaluated at the cerebral palsy clinic next week. 

I want to add that despite all that the boys have been through and the daily challenges they face, they are the sweetest happiest boys you will ever meet.  

I am sure I don't have to tell you how expensive a high risk pregnancy is with traveling out of state, extended NICU stays, numerous surgeries, doctor appointments and ongoing therapies cost.  So let's help them raise money, even if you can only do a dollar.  These precious boys need some answers!!