"Have Only Positive Expectations"
Have you ever considered what the word "HOPE" means?
To many families dealing with life threatening health issues its something to hold onto when you feel all is lost. I have a good friend, Angie, whose daughter, Makayla, was diagnosed with Retts Syndrome in June.
Retts Syndrome is a neurological disorder that affects primarily girls. It is caused by a gene mutation found on the x chromosome. In a lot of cases, its a regressive disease which means that some kids hit certain milestones, such as walking or talking, and then they regress and either stop all together doing these things or they just stop progressing.
Makayla is 4 1/2 years old and it has taken 2 years of genetic testing to finally get a diagnosis for her. You can imagine what it is like for a mom or dad of one of these special kids...day after day...trying to figure out why their child is not talking...or walking...and what is causing her delay. Makayla started having seizures at age 2 and from one mom to another who has experienced seizures in their daughters...it's a scary thing to watch. You sometimes allow yourself to wonder if the seizures will forever change your child. This past summer, Makayla was hospitalized twice due to her seizure breakout. She scared her parents to death because she literally stopped breathing.
To many families dealing with life threatening health issues its something to hold onto when you feel all is lost. I have a good friend, Angie, whose daughter, Makayla, was diagnosed with Retts Syndrome in June.
Retts Syndrome is a neurological disorder that affects primarily girls. It is caused by a gene mutation found on the x chromosome. In a lot of cases, its a regressive disease which means that some kids hit certain milestones, such as walking or talking, and then they regress and either stop all together doing these things or they just stop progressing.
Makayla is 4 1/2 years old and it has taken 2 years of genetic testing to finally get a diagnosis for her. You can imagine what it is like for a mom or dad of one of these special kids...day after day...trying to figure out why their child is not talking...or walking...and what is causing her delay. Makayla started having seizures at age 2 and from one mom to another who has experienced seizures in their daughters...it's a scary thing to watch. You sometimes allow yourself to wonder if the seizures will forever change your child. This past summer, Makayla was hospitalized twice due to her seizure breakout. She scared her parents to death because she literally stopped breathing.
Angie came into contact with a non-profit organization called "Hopekids" that give families a little bit of H.O.P.E. The kiddos in the program reflect all stages of a battle with serious illness. There are children who are newly diagnosed, in the middle of treatment, and who are healed. There is great hope in meeting someone who has been through what you are going through, and who is now healed. This wonderful organization provides hope in the form of continuous events which helps build strength and the willingness to fight. From backstage at concerts to sporting events, horseback riding, the circus, and more, Hopekids provides children and their families with activities that make them feel special and give them something to look forward to each month. With the promise of a new event always just ahead, hope for the future is a constant state of mind.
"Where there is life, there is hope"
On Sept. 24th, Hopekids is holding their annual 5K Wasatch Adventure 5K Fundraising Event. Angie and her family will be walking/running in behalf of Makayla and Charly Bella (in addition to many others). If you would like to help support Angie and Hopekids, please go to Angie's personal fund-raising page (see link below) and click on "Donate". Thank you to everyone for their continual love and support!!!
Visit Angie's blog at:
Wahoo I'm running on Angie's team!!!! Or at least going to try to run it :)
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