Their son, Alexander Michael Huston, was born prematurely on December 18, 2016 at just 25 weeks gestation. With a due date of March 30, 2017, little Alex was over 3 months premature. Their rough ride was just beginning. In less than 8 months’ time, Alex has been diagnosed with many conditions. Some diagnosed, then retracted, and then confirmed again by other doctors. He has moved from Mercy to OU Children’s Hospital NICU, has been resuscitated many times thus far, including when Mike & Sara thought they were bringing their precious son home. The hospital sent Alex home on an oxygen machine & monitor. Alex was not doing well at home for the 18 hours he was at home. They had to return back to the NICU for further treatment. Being woken many times over the months letting Mike and Sara know their baby is being bagged with chest compressions is a tremendous heart break and very frightening.
Currently, Alex is facing many challenges including being intubated on a ventilator, having to take many medications for hypertension, multiplecystic kidneys, submucosal cleft palete, grade IV/III intraventricular hemorrhage (IVH), Chronic Lung Disease/bronchopulmonary displasia, Craniosynodtosis, Moderate PFO (5mm), Inguinal hernia, Multiple liver cysts, cystic structure between spleen and pancreas, ascites, anasarca, periventricular leukomalacia (PVL) and hydrocephalus, hepatosplenomehaly, anemia, premature atrial contractions with sinus arrhythmia, and has been in Chronic kidney failure. Most recently he has been diagnosed with a rare genetic disorder called Coffin Siris Syndrom 1 as well as an extremely rare genetic disorder which is WDR19-related ciliopathy disease . Not much is known about this rare disease. Doctors have said it is progressive and severe.
Alex has taken a turn for the worst and currenly is in need of dialysis with the hope of a kidney transplant in the future. Mike and Sara are hoping another hospital with the capability to provide both of these life saving procedures will accept him.
Mike and Sara have been on a rollercoaster, and the ride is not over yet!
Please consider assisting them through a donation in Mike’s name to help with medical and living expenses as they focus their time with Alex and each other. They are very grateful if you continue to lift them and Alex up in prayer, give them encouragement in your kind words. I have not shared the entire story, but suffice it to say that they are on a high one day and thinking the worst the next, all the while attempting to console each other, and hold out the hope of the Lord healing their son to the tune of bringing him home to love, cherish and hold!
- Sandhya Makel
- Jennifer Jay
- Marti Person
Organizer and beneficiary
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