I have shared with you my disappointment with the coordinator we had for Sophie’s Make-A-Wish trip. She was very delayed and did not communicate with me at all. She basically did not give a crap about my daughter or our family.
So I wrote a letter to the Make-A-Wish foundation about it because I wanted them to know how I felt. That was three months ago and I still have not received any correspondence from them, I was expecting a written apology but I did not even get that. I am very disappointed that such an important organization would be so neglectful.
Here is the letter I wrote them:
January 11, 2013 RE: Wish Child: Sophie *********** Wish Date 12/2 – 12/8/ 2012 Dear Make A Wish Foundation, I wanted share the experience of my daughter’s Wish granted to Disney World, Florida. First, my daughter Sophie will be four in April, she was born with a rare genetic disorder called Cri du Chat Syndrome (a.k.a 5p-) where a portion of the short arm of chromosome five is missing. My daughter’s deletion happens to be quite large and she is delayed in many aspects of her development. Her immune system has been compromised since birth, and her bodies’ ability to fight off bacteria is almost nonexistent. She aspirates which can be deadly if she develops aspiration pneumonia; she is immune to most antibiotics, forcing us to use medications not approved for children in an effort to kill off bacteria and keep her alive. She has cardiac and liver complications combined with severe pan sinusitis; this has basically lead to an incurable sinus infection. Sophie has bilateral hearing loss and is quite petite as a symptom of the syndrome. She does not know how to eat so is primarily on a thickened liquid diet. Keeping her growing and at a healthy weight is a challenge in itself. Sophie also has PDD and needs a lot of sensory input to keep her calm and can have issues when she is out of routine or is set off by something in her environment. There is so much about her I could write a book on it all. When her early intervention coordinator brought up the idea of having a Wish granted for Sophie I was horrified that she would suggest it, but after speaking with her doctor who said that it was an absolutely fitting idea to our situation and getting feedback from our support team they helped me see it as a positive experience. Waking up everyday knowing that your child can be taken from you with no control is the most unbearable feeling. It’s a sad and harsh reality I live with. Sophie was approved for her wish while we lived in South Florida earlier in the year of 2012. In June of 2012 my family moved to North Carolina for better services for Sophie. I tried for several weeks to contact our local Chapter after our South Florida contact told me all of Sophie’s information had been forwarded. Neither Chapters made the effort to help communicate with each other about the transfer. When I finally made contact with the coordinator here, Ms. ******** she seemed very nice but hesitant as I explained what we had been told in FL about Sophie’s Wish. Ms. ***** explained that the process would change a bit as we were now in NC and had to follow their policies, which was completely understandable to me. In the first few months she did reach out to me and inquired once or twice as I explained we had been told Sophie’s Wish had been approved for December 2012. We chose this date because Sophie does not sweat and could not be in the heat. After some back and forth she was finally able to set it up. There was no communication for a large gap of time and it took a while for Ms. ***** to respond to my emails when I would check in for an update. As the wish date approached we discussed the travel method. I explained that Sophie is easily agitated and we had decided a flight would be better for her. Had I know the flights would include a five-hour layover I would have opted to drive. Had we driven we would have arrived 3-4 hours sooner than we did and I would have opted to not return home at 2 am. I traveled with my whole family, which included six other children in addition to Sophie. It was beyond stressful and had Ms. ***** talked to me about this I would have chosen to drive but she never reached out to me. The lack of communication with her left little to be desired. In the weeks prior to our trip I had to request school letters for my children because the schools never received them, this took a good week to get after persistent emails. I also sent various emails and left various voice mail messages for Ms. ***** to contact me as we continued to approach the Wish date and because I was clueless as to what was going on. I received the wish packet three days prior to our departure date. I really felt like Ms. ***** left everything for last-minute and gave my family and my daughter no importance. I was overwhelmed and felt no reassurance. When I made Ms. ***** aware of all this I felt that she was bothered by me and very short in her email response to me. A couple of hours later as if she realized what she sent me, she tried to be polite but it was far to late. After speaking to other Wish families at the Give Kids the World Village they all had their packets a week or more in advance and had a great contact and caring relationship with their coordinator. I feel as though we were cheated on this part of the experience. When we arrived at Give Kids the World we were beyond stressed and everyone was cranky and exhausted. Give Kids the World Village was amazing and all of its volunteers were great. The experience there was magical. This part of the trip was truly wonderful. The theme parks were great and we really enjoyed ourselves. Sophie was in heaven it was bittersweet but a wonderful experience. The trip to Disney was the perfect wish for her. Sophie met the actress Ginnifer Goodwin while at Magic Kingdom and was included in the Lion King show at Animal Kingdom. All in all this has to be one of the most magical experiences a family can have. I was disappointed that most of the other families had shirts and hats representing the Make A Wish foundation. It would have been nice if my family had received shirts and hats and not just a button. This is a way to represent the foundation and maybe you might want to take this into consideration for future wishes. This would benefit both sides, maybe even a shirt that say’s I love a Wish child for the family members. This could make siblings and parents feel so much more involved and it gives a stronger sense of support too. My intent in this letter is to share my experience, the good and bad of Sophie’s wish trip in hopes that another family does not have to feel the way we did. This was a once in a lifetime Wish for my child, so I expected or at least was hoping for the entire process to be a happy and positive experience. The negative portion of it all really took a toll on the overall experience for all of us. And another tip, it would be really nice to see Make A Wish follow-up with the families after the Wish has been granted. It’s not just a free trip, it’s so much deeper and more powerful than you can imagine. The foundation has now become a part of my families’ journey. It should be a priority for the foundation to keep a positive relationship with Wish families, especially since no one knows what the future holds. All of us families who have become receivers of a Wish for a loved one are real people, not just clients. We face obstacles many do not and overcome despair and heartache many could never endure. The volunteers and employees of the foundation should be educated on this, as it is so much more important than many could imagine. If you are interested in reading about Sophie’s wish in more detail you can visit my blog and read about Sophie’s Make A Wish trip there. Should you wish to contact me, I have provided my email and home address. Additionally, I am not interested in receiving any further communications from Ms. ***** as she has already proved to me that this position of putting together wishes is not important to her. Sincerely, Charity De Leon
My Dance in the Rain 