Fall 2011

Jake

Jake was born on September 13, 2003. I had a normal, healthy pregnancy and we didn’t know there was a problem until the morning after Jake was born. Feeding issues and apparent physical anomalies sent him to the NICU where he spent the next 18 days being poked and prodded and tested for various syndromes. We were released from the hospital without a diagnosis, but were told there is definitely “something wrong”. The unknown was the worst. The fact, it was absolutely devastating. We were the first time parents and in complete shock.

At 6 months old, Jake started having seizures and this became “the final piece of the puzzle”.  Jake’s geneticist remembered reading something about Pallister-Killian Syndrome (PKS) and seizures and he decided to do a skin biopsy. Needless to say, within 2 weeks we had our diagnosis.

Jake is currently 8 year old and he is globally delayed. He is non-verbal, non-ambulatory, and has severe hearing and vision impairments. Jake has had 10 different surgeries on his eyes, ears and his right hip. Jake’s seizures were later accompanied with reflux, apnea, choking and loss of oxygen. Doctors wanted to do a tracheotomy and insert a feeding tube. We refused believing that things would get better and thank God we did. For about 6 months, we did everything ourselves. We moved him into our bedroom and had to stimulate him to breathe 4-5 times a night. It was such a scary time with little to no sleep and 4 year old twins to care for as well. With the help of Care at Home Program with Angela’s House, we were approved for night nursing, so Jake could be monitored while he slept.’

The Care at Home Program with Angela’s House has changed our lives, providing us with the equipment and services needed to help make life a little easier. It is stressful enough simply caring for a child with special needs. When you add the stress of questions like…where can Jake sleep safely now that he is too big for a crib? How can he eat properly with the correct positioning to avoid choking or aspiration? How are we going to lift him, shower him, get him in the house or travel with him? How can we spend time focusing on out typical children who also need our attention and love? These “simple” questions are overwhelmingly stressful, and hardly any of these issues are addressed by regular insurance companies. Thanks to this program, we have a ramp van to travel with Jake, a special bed, a shower chair with a roll-in shower, a feeding chair, a front porch lift to get him in the house and nursing in the home to care for Jake so we can focus on our other children as well.

We feel blessed having such a special child. Jake is here for a reason. People hear his story and see what he goes through each and every day and it helps put things in perspective. Jake simple radiates “PURE UNCONDTIONAL LOVE” as his smile and laugh will melt your heart. The tears of worry and despair from his first weeks in the NICU, to his surgeries and subsequent hospital stays, transform into constant tears of joy we now share with an extended network of family and friends as we celebrate each smile, laugh and EVERY little accomplishment. We take nothing for granted. Jake’s 6 year old brother and sister (Brandon and Kayla) are just waiting for Jake to “get big like them”. We love Jake with all our hearts and just know there are endless possibilities for him.

It’s amazing to know we are not alone….that there are people from Angela’s House who are willing to help in any way – thank you Angela’s House for all that you do and for letting us share Jake’s story. Please visit Jake’s website at www.jakezane13.com and let him make you smile.

Message from the Executive Director Bob Policastro

It is amazing to think we are approaching the end of our 19^th year of assisting families of children with special health care needs. Next year will be exciting as we Celebrate our 20^th Anniversary.

As I think back on the years that have past, is has been a long and exciting journey. We feel blessed everyday to be able to help parents going through difficult times, as I have walked in their shoes and I will never forget what it feels like.

In regards to our supporters, I find it hard to express the right words that would that show our appreciation for what you have done for us. I cannot imagine how we, or the families we assist, would survive without your help. I know I thank people all the time but I would like to take this opportunity to thank everyone again from the bottom of m hearts

Socail Media, We do everything we can to keep in touch with new technology and the new resources or social media. I invite you to join us on Facebook and Twitter. Do a search for Angela’s House. We look forward to seeing you.

We are very excited to chare the news with you that we are moving forward in building Angela’s House III in Stony Brook. NYS has approved our budget and the final plans are with the architect. This will allow us to complete the construction by sometime next year. It will be heartwarming to see these children move into this comfortable home. This budget that was approved will leave us with a great shortfall, so our fundraising efforts next year will help offset the cost to this home built.

Come join us on Facebook, Twitter and our website to see and hear about the exciting events we have planned for next year.

Thank you for all your support

Save the date Angel of Hope Candlelight Ceremony December 3, 2011 4 pm, Eisenhower Park for all families that have lost a child

Thanks to Our Supporters

Angela’s House Golf Outing

Everything was perfect with the golf outing. The weather was beautiful, the course was full with our supporters and Indian Hills CC had the gold course in top shape. Our honoree Sean Tracey was thanked for being our first board member and a loyal supporter of Angela’s House over the past 20 \years. At our dinner, we had Doug Geed from News 12 as our MC.

Your Gifts Make A Difference

Angela’s House uses public programs, grants and donations to assist families caring for their children with special health care needs that are medically fragile, chronically ill or living with a life threatening illness. Your donations and assistance with fund raising allows us to ease the financial burdens our families experience with the day-to-day care of these children. These funds are very important, especially for children who need help right away but must wait months to get assistance through public programs. These funds are used to purchase medical supplies, medical care, therapeutic equipment, and other items not covered by insurance. Below are a few of the families and children we assist in out programs.

Newsday did a very compelling story of beautiful little Marissa. The story touches on her loving parents, Marissa’s rare disease that leaves her dependent on a ventilator, and her determination to be just like all the other children. She is a great inspiration to us all.

Donations in Lieu of Flowers

In a time of grieving, this family displayed great generosity by requesting donations be made to Angela’s House in lieu of flowers Danielle Carnaxide

Donations in Memory of

• Andrew Baerlein
• Catherine Basler
• Dominic Capone
• Danielle Carnaxide
• Zachary Cashin
• Emily DeCesare
• Athena Fogarty
• Kelly Anne Ficken
• Graham Gurcan
• Kyle Herring
• Katelyn Hesslberg
• Brandon LeMaire
• Abigail Peyman
• Paulie Poloskey
• Joan Prisco
• Keira Sweeney
• Harry A. Walter
• William Zukowski

Donations in Honor of

• Kyle Gaunay
• The Altbacker Family
• Oliver Miller
• Sam & Jake Lazazzaro
• Mackenzie Borches

William J. Pace Memorial Golf Outing

Benefiting Angela’s House

Pace’s Steak House in Hauppauge and Port Jefferson along with the Law Office of Rinaldo Pace in Smithtown, held their 7th annual golf outing honoring their brother William. The dinner included the delicious grilled steaks from Pace’s Steak House and a comedy show with Robyn Schall, Michael Young Cho and Just Plain Keith.

Fishing Charter Fundraiser

Our Fishing Fundraiser was held on July 26. We had a great evening thanks to Capt. Chris from the charter boat Fishtail. He helped us catch lots of fish.

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