Justin is a nine year old boy that was born with a rare birth defect called craniosynostosis. In addition to pressure in the brain, this causes delays in development, abnormalities to the skull and face. Over the years he has had reconstructive surgery and continues to face medical issues. Because there is no cure and only basic treatments, Justin must take medication and work with a large number of specialists on an ongoing basis.
Each of his conditions creates obstacles in day to day life. He suffers from headaches, fatigue, stomach pain, seizures and leg pain. The leg pain makes it difficult to balance and walk. It takes significant time and effort for Justin to do everyday things that are second nature to many of us.
Justin’s passion is animals. He loves cuddling with them and they help him to relax. Justin’s Wish is to have a service dog. The service dog would be trained by 4 Paws for Ability, Inc. located in Xenia, Ohio. They will train a dog specifically to help Justin, whose seizures can be extreme. In his case, the service dog would alert parents of seizures, provide comfort, and also help Justin relax during procedures, assist him with balance, and other necessary support.
How are your children enjoying their summer break? I know mine are always on the lookout for new activities to keep occupied. When school is not is session, parents also look for additional outlets to educate and entertain. This week we will give some local summer activity options that inspire kids to have fun and be creative.
Ways to Help New Hope for Kids
New Hope for Kids is an independent, locally based charity that focuses on support and enrichment for children in Central Florida. Our mission is to support children and families grieving the death of a loved one and to grant wishes to children with life-threatening illnesses. There is no charge for our services, which makes donations critical to our programs.
I am pleased to introduce our guest blogger Jackie Mroczka. Jackie graduated from Pennsylvania State University with a bachelor’s degree in Business Administration in 2012, and has since pursued a certificate from Cornell University in Hospitality Management. While at Penn State, she earned Deans List honors several times.
The weather is warming up and many children in Central Florida are enjoying Spring Break. What a nice time it is to get out of the house and go on some exciting adventures with our loved ones. As we are getting further into the year, it is time to begin thinking about summer activities and camps that understand and accommodate children with special needs.
When children are diagnosed with a serious illness, parents and guardians, in addition to organizations like New Hope for Kids, do everything within their power to assist the child to try to make their struggle just a little less painful. Coping with a serious illness can bring on both challenges within a family, as well as opportunities. One area that often gets overlooked is the need for sibling support. This need can be looked at from two very different, yet both equally important, viewpoints. First, siblings provide valuable, much needed support and reassurance to the child with the illness in many important ways. Second, the need for an outlet for siblings to voice their concerns and build stronger relationships with both family and friends is beneficial to them, as it can provide higher self-esteem and assist them in achieving their goals.
What better way to begin your year than with a determination to make your life and the lives around you happier. That can be a tall order, and let’s be honest, we all have responsibilities to fulfill. Sound a little too light-headed or out of touch with reality? Sirena (pictured above) helped make Marc’s wish come true.
At New Hope for Kids, everyone can find a way to accomplish that worthwhile goal. Here are some ideas:
- 1 X Month for 8 hours – volunteer to set up, decorate and help with a family or fundraising event.
- 2 X Month for 5 hours – volunteer as a grief facilitator 2 evenings from 5:45 to 8:15 p.m.
- 3 X Month for 6 to 9 hours – volunteer to make a wish come true (like Sirena did for Marc to have his wish for a Portuguese Water dog) through research, phone calls, and contacts.
- 4 X Month for 8 to 16 hours – volunteer as a clerical assistant in the main office, 544 Mayo Ave., Maitland or the grief center, 900 N. Maitland Ave., Maitland.
On December 20, New Hope for Kids’ Wish child, Sean was honored as the “Magic Maker” and received his own Magic jersey to wear as he and his family sat courtside. His mom, Josy shared her impressions of the evening:
Recently, a list of possible blog titles was created. Here are the categories to address beginning January, 2016:
I love this time of the year…a new beginning….an opportunity to do things differently. Apparently, I am not alone. Gym memberships increase; attics and closets are cleaned and resolutions are made in hopes of better results in the New Year. We see possibilities that the future could bring if we could only stick to our plans and make them.