Thanks for shining a light
Thank you for the excellent article highlighting the challenges of families with medically fragile children on Long Island, especially on the East End. My heart goes out to those who cannot care for their children in their own homes due to the specialized need for advanced technologies and specially trained nursing, available only in medical facilities.
There is also a number of us families on the East End and elsewhere on Long Island who care for our medically fragile children in our homes. These families have nursing care and aides and therapists in and out of our homes to help us care for the complex needs of our children. Many families like us travel to hospitals all over Long Island, New York City and out of state to find doctors who specialize in the genetic syndromes and diseases that affect our children. My daughter Johanna has CCM3, a familial genetic illness that has only been identified in 25 people in the U.S. and 50 worldwide.
Thank you for highlighting the work of Bob Policastro and Angela’s House. Angela’s House facilitates services for many of our East End families who have medically fragile children at home. Angela’s House provides above and beyond the state and local funding to assist us in caring for our kids.
This past Christmas, Angela’s House, with We Care For Kids, Inc., hosted a tremendous party for the kids and their families. The celebration focused on giving us a place to have fun and enjoy one another’s company. Besides gifts for the kids, parents were given gifts like vacuums and coffee and panini makers to make our lives easier. We were overwhelmed by the generous donations of organizations assisting Angela’s House.
Angela’s House finds creative ways to help families like ours. Johanna has been receiving experimental chemo treatments through NYU this past year. The travel and parking expenses were very difficult to manage on our tight budget. Angela’s House reimburses some of those expenses to support us as we try to find a cure for Johanna’s disease. Just last week, Dawn, our nurse case manager from Angela’s House, met me at the doctor’s office for our monthly meeting to discuss Johanna’s care plan and the challenges that are ahead. When we received news of an impending surgery, Dawn was right there for me, offering her assistance to get us ready for this next hurdle.
Bob Policastro and his wife, Angela, transformed their own tragedy of losing their 1-year-old medically fragile daughter, also named Angela, and turned it into a transformation for numerous Long Island families.
Thanks again to Vera Chinese and the News-Review for highlighting the need for more housing for medically fragile kids and the assistance that Angela’s House provides to many families at home. I also want to encourage members of our local community to consider making a donation to Angela’s House. Tax-deductible donations can be made online at angelashouse.org or by mail to Angela’s House, P.O. Box 5052, Hauppauge, NY 11788.
God bless you all
“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31.
In a time of tragic loss, one must think of something to hold onto to reassure that God’s strength is ever-present. That’s what I have done with my favorite Bible verse above.
My fellow workers at Town Hall have given me great support, as well as the community I live in. I couldn’t ask for more caring and wonderful people that have showed their abiding love to my daughter and myself. I am very fortunate in every way.
First and foremost, I would like to thank the Riverhead Fire Department volunteers for their service in a matter of seconds after the alarm went off; to Barbaraellen Koch for being at my house so soon to help me out, taking pictures of me and my daughter; Bonnie Sue Luce; Georgette Case, who took me to her house for breakfast and gave me new clothes since mine were burned in the fire; and Diane Wilhelm, who let me stay at her house for three days after the fire. I’m very thankful she extended the invitation.
And thank you to all the wonderful people for their donations that have helped me tremendously through it all. Thank you all so very much and God bless you all.
Do what’s right
It’s been said over and over that the only agenda of some elected to Congress is to assure that our president fails, and that they will do whatever is necessary to see that it happens!
Whatever happened to their sworn oath to act in a way that benefits their constituents? Is acting in the best interest of the country sitting on their hands when they are called upon to pass legislation that will assure that people have jobs, not lose their homes or be able to afford a good education for their children? Is acting in the country’s best interest being so close-minded that they do not care that the sick will not have medical care?
These elected officials should go back to their constituents and take a poll to see who wants any of the above! It is up to those in Congress to do the right thing for our country and put their pettiness aside.
This president will be in office for only five more years. What they in Congress are doing will last many a lifetime!
Not all happy stories
I am so happy to hear that your reader last week had a positive experience with the health of the shelter dogs he adopted. I wish the men who adopted Champ, a senior pit with advanced heartworm and Lyme disease, and the dog trainer who adopted an abused pit bull named Misty last February were as lucky. Misty, now Missy, had severe emotional and physical problems from the abuse she suffered from two men who turned her in to trainer Ray Bozzello and me. She also was 20 pounds underweight. I visited Misty yesterday and saw Champ a few weeks ago. These were happy endings. Another dog that RSVP adopted because the ACO refused to pay for surgery, Frances, a 10-month-old pit puppy who, like Misty, had been used for fighting, would have been euthanized had I not taken her. Frances’ leg was badly broken. Now called Sadie, Frances has made another family very happy. It took me five months and a lot of donation money to make this happen. Buster, a Riverhead dog who was adopted out of the Kent Shelter, was filled with worms and was 15 pounds underweight. Kent found Buster a great home.
Sadly, these stories are the ones I hear because town money is not being spent on the emotional and physical health of the animals at Riverhead. Money particularly needs to be spent to rehabilitate the emotionally damaged dogs that the privatization group will have to evaluate when they take over the Riverhead shelter next month. Let’s hope these poor dogs will be given a second chance and not become a euthanasia statistic because of the way the town has so callously neglected them. Sadly, dogs don’t vote.