Thursday, July 10, 2008

Thursday, July 10, 2008 UPDATE

Please visit our new site at http://www.jaidensangel.org/

Although it is still under construction, we hope to have it completed by this weekend.

We have finally established our Board of Directors and submitted out federal application for 501c3 status. What an arduous process! The application itself was 28 pages, and we also had to create and submit a Narrative Description of Activities (6 pages of text) and our By-Laws, which turned out to be another 9 pages!

We created a mission statement that is focused on providing support and services to families dealing with critically ill or injured children. Our primary focus is to offer financial assistance and gas cards, to create canvas hand-prints, to help with funereal expenses when necessary, and to help families publicize their personal stories to solicit donations straight to the families in need.

Continued fund-raising is essential, as we have already helped 5 families, and there are 2 more families that have contacted us for assistance (another childhood cancer patient and a tragic accident resulting in major injuries).

Although Family Fun Day required a tremendous amount of personal time and effort, we learned a lot and the event was a great success. Hopefully next year’s Fun Day will be even more successful without as much leg work.

Our next big event is the First Annual Golf Tournament. This will be held on Monday, September 22, 2008; which is Jaiden’s 9th birthday. We will play a scramble format with a shotgun start at approximately 11:00 AM. Golfers should arrive no later than 10:00 AM. We have many great tournament prizes, silent auction items, hole-in-one prizes, a 50/50 raffle, mulligans for sale and other contests.

Registration will be available online or through the mail beginning next week, at a cost of $125 per golfer. This includes greens fees, cart usage, dinner, 2 waters on the course, tournament prizes, and possibly breakfast or lunch (depending on sponsorship). Dinner tickets will also be available for folks who cannot attend the tournament but would like to join us after golf for the reception. Tickets will be $30, and guests should arrive by 4:00 PM.

UPDATES ON FAMILIES WE HAVE HELPED!

We were able to provide gas cards and a financial donation to a young boy from Amherst, NH who seriously injured his eye during a ball game; as well as another youngster from Nashua, NH who recently underwent brain surgery to remove a tumor. Both boys are doing well and were grateful for our assistance.

We also presented a check to a family in Merrimack whose young daughter is battling
Ewing's Sarcoma, which is a rare and very aggressive form of bone cancer. We are planning to meet with this family later this month to create framed canvas hand prints.

Our most emotional encounter was just this week. Jaiden’s Godmother and co-Board Member of our Foundation, Wendy, and I met with a young family from Merrimack, NH to do canvas hand-prints. This family has 2 beautiful children who have both been diagnosed with Batten’s disease, an inherited disorder of the nervous system. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Experimental procedures are being pursued, but sadly, this disease is currently fatal; with a life expectancy of only 6-12 years.

We brought a bucket of assorted paint colors and canvas. After a nice visit with Mom and Dad, we all worked together to apply paint to each child’s hands and capture their prints on the canvas. We had custom matching mats created, and the final product is amazing! This will be a lasting treasure for this family, and it was meant so much to both Wendy and I to be a part of its creation.

This family is in the process of modifying their current home to make it more conducive to their needs. The older boy, who is just five, is already in a wheelchair; and his 3 year old sister will eventually be in one as well. The foundation is making a financial contribution toward the remodeling project as well, which will take place later this year.

We were also contacted this week by a social worker from Boston Children’s Hospital. She wrote:

There have been so many times I have thought about you and your family over the past months and just this past week we worked with a family here who brought back so many memories and thoughts of you and Jaiden.

They were in the ICU early last week, and are now struggling to pay for all of their daughter's expenses. Throughout their admission, many of the staff members thought of you and your family. (Sadly they also ended up losing their daughter.)

This family would benefit greatly from assistance with funeral expenses, if you feel this is an area in which you could be helpful. The hospital has already agreed to pay a portion of the fees but not enough to cover all of the family's needs.

Jaiden’s Angel has offered to pay the balance due, so this family can memorialize their precious daughter without worry. Each time that we reach out and touch another family, I can feel Jaiden’s spirit. By helping others, we are able to continue sharing our love for Jaiden. I know that she was waiting at the gates to greet this newest angel with her treasured smile and hug. Carrying on Jaiden’s legacy brings hope and faith to so many, including myself.

Thank you for your continued support. Please let me know if you know of any potential sponsors for Jaiden’s Angel First Annual Golf Tournament.

Best Wishes to All,
~ Holleigh Tlapa ~
Forever Jaiden’s Mom