Special boy at risk of being separated from family

Jared was not supposed to live past one year old.  He is now 13 years old thanks to the love and care of his mother.  The state says Jared will get his medical needs taken care of if his Mom signs him over as a ward of the state.  This can not happen.  Shirley is his mom and she has literally been awake for 2 weeks fighting, writing letters, brainstorming and worrying about the future of her Jarebear.  Here is a letter she wrote to the governor. 

To whom it may concern

My name is Shirley Correia, I am writing to you on behalf of my son, Jared Carreras.

Jared is a 12 year old, medically complex child. He suffered a stroke in utero and was ultimately born with Hydrocephalus, Septo-Optic-Dysplasia & Optic-Nerve-Hypoplasia. He is completely blind. He had his first brain surgery, a VP Shunt placed at 6 days old. Within a month he had his second brain surgery, because his shunt had malfunctioned. As the years went on, Jared’s list of diagnosis’ continued to grow. When Jared was 18 months old, he began having seizures. By the time Jared was 3 he could not keep foods down & was weighing a whole 17 pounds. He had a Nissen Fundoplication procedure and placement of a feeding tube in December 2009. Jared’s seizure have only gotten worse as he continued to get older. There was a point where he was having 40-50 seizures an hour. It turned out that he had a cyst on his brain that needed to be fenestrated. Well, that surgery caused more complications – because after that, his shunt malfunctioned FOUR times in a 6 week period. As Jared’s seizures continued to worsen, his epilepsy diagnosis change to Lennox Gastuat Syndrome. He spent 2 years on the Ketogenic Diet for seizure control, but that did harm to his organs and body. He continues to have seizures, even in his sleep.

I am writing to you because we need your help. We received notice this week that Jared is no longer eligible for Husky A due do our income. Jared currently gets 10 hours of skilled nursing in home daily & because he has lost his Husky, he is going to be losing his home nursing, effective 2/24/19. This CAN NOT happen. Jared needs his nursing to keep him at home, healthy. The nurses provide the necessary help that keeps us together as a family & not have to worry about Jared’s health issues all of the time. We can breathe for the few hours that they are here. I work a full time job, and there are just not enough hours in the day. At some point, I need to sleep too. Jared has private insurance as his primary – but they do not cover skilled nursing. We have applied for the Katie Beckett Waiver here in Connecticut, however we are told there is a 4-6 year waiting list at this time. Jared can not go without his insurance, and we certainly CANNOT afford out of pocket nursing. Also, it’s more than just the nursing, it’s his incontinence supplies, his feeding tube formulas, his durable medical equipment (wheelchairs, wheelchair repairs, positioning chairs, walkers, standers, AFO’s etc) & let’s not forget the TEAM of specialist who follow Jared at Yale. We can not afford these out of pocket expenses.

This loss is causing a major problem for us & we are honestly afraid of what the future holds for our dear, Jared. He absolutely WITHOUT A DOUBT NEEDS his homecare. Please I am BEGGING for your help and attention to this matter.

PLEASE HELP JARED – Help us help Jared.

This is NOT fair!!!