This is a Christmas story - about children and about giving. It is about loving and about heartache. It shows that Christmas is alive and well in the hearts of the girls in Girl Scout Troop 461. A good place to start this story is with the Balow family who live in Belleville, Illinois. Danny and Barb Balow have two children, Haley, 2, and Danny, Jr., 6 months. Danny, Jr. was born with spina bifida as well as a very rare blood disease. He is the only person in the United States with this disease; and the family was told he would not live to be six months old. He was sent home after the last surgery so that he could pass away peacefully at home. However, Danny turned six months old on October 3 and is still fighting for his life. The baby’s father, Danny, Sr., is with the Air Force and is regularly deployed to other countries. Unfortunately, neither the Air Force nor its insurance covers the cost of the equipment necessary to keep Danny, Jr. alive, nor do they cover the cost of electricity used to run the machinery 24 hours a day. The year has obviously been a difficult year for the family. And, now for the rest of the story … For the past three years, Girl Scout Troop 461 in the Spencerport Service Unit has participated in Operation Christmas Child, in which a group adopts a child or children from over 100 countries around the world. Paula DeFranco-Cantatore and Jody Grant are leaders. This year in addition to adopting children in other parts of the world, Troop 461 has decided to adopt two-year-old Haley Balow, a little girl who otherwise might not have a Christmas. The girls have been keeping track of the Balows through emails and a website set up due to the need to share information and updates on Danny with friends and family. (Before the website the family was receiving hundreds of emails asking about Danny.) They hope to somehow help this family have a good Christmas in spite of all the problems they have had to deal with. To get just a hint of what the family has been going through, part of a journal kept by Danny, Sr. follows: "Danny being born was by far the most bittersweet experience of my life as a father. Seeing him come into this world, and also seeing as they pulled him from the womb, his back split wide open in the area newly discovered. I got to kiss him as his mother did, and he was rushed into an adjoining sterile room, where they put a sterile compress onto his spine. Seeing him writhing as they wrapped his spine tore my heart from my chest. I was motioned into the room and held his hand as he cried from the open air hitting his open spine, and we cried together." Later in the journal he writes, "Barb and I take it 10 minutes at a time. We have nursing care, but that’s a whole other story, truly worth telling at another time. In summary, we are worn slick, but riding out the storm. I have buried the old ‘we can shoulder this ourselves’ issue that dads have in the beginning of the fight. Now I am so worn out, I look back and can only smile at how foolish I was fighting this fight by myself in the beginning. Friends, family, my Air Force family and even the local community have offered help and assistance, and I now accept it with open arms. We are watching the clock tick down for Danny, as he gets weaker, and loses some of his abilities. It’s been a struggle, but I can guarantee you that I wouldn’t trade a minute of it!" And in a recent email written to DeFranco-Cantatore, Barb Balow writes: "Danny is doing OK right now; they did the test on his trach (breathing tube) and gave us options that no parent ever wants to face or try and decide. Number 1 option is they take the trach out, and he dies within three months, a horrible death … and a long one. And the next option is to send him home, and he will for sure get pneumonia again, because the trach is a haven for infection and sickness, and then let him die at home from the pneumonia. Option 3 is that we take him back once he gets sick and leave him in the hospital for two weeks every month to clear the pneumonia, so we would have him home 17 days and they keep him the rest of the month. "I think I cried all night last night. How do you decide something like this as a parent? "The last option was to put him on life support and let him live until he’s about four or five, the lifespan of these kids, and watch him be paralyzed and go mentally retarded and blind. The last option is totally unacceptable to us. We have watched him suffer enough and go through so much pain. So we sit here trying to decide now what to do. And what we can live with. "They told us to have a great Christmas for the kids, so Haley can remember her brother in a good way and having fun. We plan on doing this although it’s hard knowing what we face." Scout Laura Shea says, "I think we are lucky, because we are healthy. I hope the little boy will be alright." Alexandra Catatore, another scout and daughter of one of the leaders, says, "Her family (Haley’s) has to spend all their money on her little brother, because he is very sick and is going to go to heaven soon, but there’s still a hope that he’ll be here for his first Christmas. I wanted it to be a special one, so I saved my money and bought lots of gifts. My troop helped out and bought gifts too. Mom and I are going to wrap them and send them to Haley and Danny, Jr. It’s fun to shop so you can make someone else happy." The scouts bought Haley a denim book bag filled with school supplies fit for a 2-year-old in pre-school, a large variety of books, about 10 different outfits, art supplies such as crayons, markers, paints and coloring books, various treats such as candy canes, and pajamas. For Danny Jr. they bought a variety of plush animals, books for mom to read to him, a Fisher Price "rock-a-stack" and some bibs. The Cantatore family also purchased clothing for Haley, sent a monetary donation in an envelope addressed to Danny Jr. to be used as necessary. They bought a shirt and sweater for Danny, Sr., a shirt and sweater for Barb. The proprietor of "Autumn Wind Botanicals," Joella Valerie, donated a gift bag for Barb filled with bath and body products. Note: For information on the Balows or to offer assistance email Troop 461 at troop461@rochester.rr.com. To send a card, address it to the Balow Family, 608 Oxen Court, Belleville, IL 62221. |
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