Zachary was born with many issues and has endured a lot of hurdles in the first few years of his life. He continues to battle illnesses that hinder him from participating in many activities. He spends a lot of time going back and forth to doctor’s appointments and hospital’s for tests and procedures.

The initial challenge Zachary faced was a birth defect of the heart called TGA or Transposition of the Great Vessels. (Transposition of the Great Vessels is a heart defect that occurs from birth-congenital. The two major vessels that carry blood away from the heart -- the aorta and the pulmonary artery -- are switched or transposed.)

After Zachary was born he was put on life-support and flown from one hospital to another due to the severity of his heart defect. He spent the first several days on life-support while waiting to have the surgery called an Arterial Switch Procedure done. The surgery was a 9 ½ hour open heart procedure; he had many complications and did not respond as well to the “switch” as we had hoped. Zachary had a phenomenal medical team that stayed with him day and night through some of the roughest times; we were limited visits to 15 minutes every 6 hours. The Cardiac Surgeon even slept bedside next to Zachary due to the issues he was having. Zachary spent several weeks in the Caridiac Care Unit recovering. He was eventually moved back into the NICU where he had to learn how to drink from a bottle and other milestones before he was allowed to come home. Zachary finally achieved his goals and was allowed to come home.

Our celebration of having Zachary home didn’t last long. A few weeks after Zachary came home he had turned blue so we immediately rushed him back to the hospital where he was admitted and placed on oxygen. Within a few hours we were told he was having complications at the chest tube sites and was also diagnosed with RSV-Respiratory Syncytial Virus. This illness with complications ended with a 14 day stay in the hospital. It was a long road but Zachary finally got better from this illness.

About a month later Zachary had to have another procedure done for another defect he was born with called Hypospadias. The doctor was very optimistic about the surgery and said that he should only need one surgery to correct the problem. Unfortunately, Zachary ended up with a massive infection and complications from the surgery, and had to go back into the hospital for another 10 days. Again it was a long recovery for Zachary. At that time we were told that he would need at least two more surgeries to fix the defect. During the next several months Zach did have the various procedures done to finish correcting his issue. As he was healing another problem arose, all of a sudden he had growths and tumors growing in this area causing more surgeries and additional hospital stays.

At about 10 months old Zachary was diagnosed with Hydrocephalus (swelling/fluid in the brain). We were told he was going to need major surgery to put a shunt in his head to drain the excess fluid. We chose to wait and monitor him through regular checkups and testing. Which he is still has regular checkups to monitor and track any complications or issues that may arise.

A short time after Zachary turned a year old he had another bout of RSV which caused another long stay in the hospital and shortly after that the doctors decided to remove Zachary’s tonsils and adenoids due to the chronic infections he was experiencing.

Zachary continued to have respiratory issues. He had to have several bronchoscopies and other tests to check his lungs and monitor his breathing.

He has visited many specialists and specialty hospitals in search of relief and answers. He continues with reoccurring pneumonias and infections despite all the care and treatments he is receiving.

Matthew was first diagnosed with pneumonia at about 9 months old and has continued to have respiratory problems. He has had pneumonia about every 3-4 months since the initial infection.

Matthew underwent allergy testing and asthma testing at just 18 months old. He was diagnosed with severe allergies and asthma at that time. He continued to go for regular treatments and checkups. He has had reactions to vaccinations as well as other medications that were meant to help him with his condition.

Matthew has had to have several bronchoscopies for his breathing issues. He has undergone tests and procedures at various specialty doctors and facilities to determine the cause and possible solutions for his issues. He has been tested for some of the most common and rarest conditions/diseases.

Having asthma has caused some complications to his reoccurring respiratory infections. It makes it harder to treat and recover from any illness he may get.

Every year Matthew has had a minimum of 4 pneumonia’s which includes a hospital stay for several days to a couple of weeks. He also gets other infections that complicate his issues making it harder to treat.

Due to his chronic illnesses he has missed a lot of school days in fact last year he had pneumonia with hospitalizations 5 times. By March he had missed so many days he needed to have homebound instruction to make up the missed days and work.

Within the last year his body has started making tumors that are being monitored through biopsies. Some biopsies have come back negative and others inconclusive. We continue to monitor these abnormalities closely.

As you can see both children have had a rough time. They are both chronically ill and although they do not let their illnesses define them it does hinder them in many ways. We have opted to home-school them this year due to appointments and the way the new medication has to be administered. Hopefully this decision helps to limit their exposure to outside illnesses and they have a healthier school year.

Most recently, both kids were diagnosed with an immune deficiency and they need a medication that is not currently covered by insurance. The drug company it’s self has a program for this specialty medication but we do not qualify due to having “private” health insurance. We currently do not qualify for any state or government programs. Therefore, we need to pay out of pocket for this specialty medication. Our cost is $5,000 a month for each child for the generic form of this medication. Any and all assistance would be greatly appreciated.

Casillo Benefit Association, Inc.

2224 Main St.

Walpole, MA 02081