For I know the plans I have for you

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future
Jeremiah 29:11

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It may be hard to believe or understand, but GOD has plans for our lives. HIS plans were made long before we were ever born. They may not be the plans that we had in mind, but HE knows us better than we know ourselves. HE wants goodness and happiness for us and for our lives. It is up to us to make good choices and listen for HIM and to HIM…

I have already learned that my plans are not always what HIS plans are. As I grow in my role as a wife and mother, I am realizing what HIS plans are for my life… plans to be a stronger partner to my husband than I had ever imagined, a tireless mother to a child with a terminal illness, a woman devoting her life to saving not only her child but many other children like her, an advocate for Research and Legislation and very importantly, helping others know how much GOD loves and cares for them.

Over the past year, I have had many people ask me how I get through day to day and live with Abby’s diagnosis, how do I stay positive and continue with hope for a cure? My answer is this…GOD is my HOPE, HE gives me HOPE, HE loves me and HE loves Abby, HE will heal her… Her healing may not come in the form that I pray for, but HE will heal her.

Thank you GOD for giving me strength and making me the woman that I am…

I was so happy that Abby agreed to cheer this winter for basketball. A special friend asked her if she wanted to participate. She was not agreeable at first. Her excuse was that the grass was itchy when she cheered for football a few years ago. I explained to her that this was basketball and there would be no itchy grass. She finally agreed to cheer and thankfully the squad was very relaxed and non-competitive. Abby is not the most coordinated, she claps off beat, kicks sideways and looks all over the place while cheering. That being said…. we LOVE to watch her and feel the pride of a King and Queen watching our little princess cheer her heart out.

When the season ended recently, Abby received her trophy and beamed with happiness and pride. We were in the car driving one day and she said “mom, I want to cheer again next year.” My first reaction was to tell her that of course she could cheer again next year. I was so happy that she had a great experience and was making plans for her future.

My mind then drifted off…”a year from now…that is a long time for a child with Sanfilippo Syndrome…she will be 11 years old then…What if Abby is not able to cheer again?…What if she loses abilities over the next year?… What if she is not steady on her feet?… What if she is not able to form sentences?… What if she is not able to kick or clap her hands?… What if she is not able to wave pom-poms?… What if she is not able to follow directions and learn a cheer chant?… What if she is does not get joy in these activities anymore?”…

I started to feel sadness, tearful, desperate to breathe and panicky. I never knew what a panic attack felt like until Abby was diagnosed with Sanfilippo Syndrome. For me, it is a feeling of total loss of control, panic, sobbing, and difficulty breathing. Over the past 2 years, I have had that feeling on a few occasions. That sickening feeling started coming back. The feeling of having no control, feeling at the mercy of the physicians, wondering when there would be a treatment or cure to save her life… I pleaded to GOD to please let Abby stay the same over the next year, please GOD don’t let her regress, lose her speech or her ability to walk. Please let her still be able to go to a regular school, go to dance class, ride horses, be like a normal child. Please…

As I wavered between feeling hopeless and pleading for Abby’s health and abilities, I began to feel a calmness again…the calmness that always brings me back. I was reminded of GOD’s message…

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future

I stopped pleading with HIM and started thanking HIM. Thank you GOD that Abby can still walk and hold my hand. Thank you GOD that she can still tell me when she is hungry, hurting, itchy or cold. Thank you GOD that she can laugh and play with her sister. Thank you GOD that Abby can still plan for her future and make dreams for tomorrow. They may not be the plans that I had for her but I will trust in YOUR plans for her. YOUR plans have already proven to be much bigger than I would have ever imagined for her.

Thank you GOD for letting me be Abby’s mom…

Update on Abby and Research

Abby is a happy little girl and enjoys playing on her computer, watching movies, playing with Barbee Dolls and anything Disney related. She especially loves playing with her sister Kate.

We are very happy and blessed that Abby has had a stable year with no noticeable regression. She is in a regular 4th grade classroom about 30% of the day and goes to the special education class the remaining time for reading, writing, math and speech therapy. She continues to make small progress with her learning. She has adjusted well to our move and her new school. Abby’s medical exams over the past year have shown no hearing loss, perfect vision, normal hip x-rays and a return to normal to near-normal liver enzymes after being elevated for the past 2 years. Thus far, she has made it through the winter with no major illnesses.

In 2014, we created the Abby Grace Foundation, which strives to promote awareness and contribute to Scientific Research, with a goal of finding a cure for Sanfilippo Syndrome. Our gratitude goes out to so many people that helped us contribute to funding a cure for Abby and other children affected with this rare, terminal disease. The funds raised so far are helping bring Gene Therapy to clinical trial. We have learned there are many steps involved in bringing a treatment to trial. We try to remain patient and hopeful and are committed to continuing this fight for Abby and other children with Sanfilippo Syndrome.

We will fight until there is a cure.


*Please visit Abby’s website abbygracefoundation.org or Facebook page at www.facebook.com/CureSanfilippo to learn more about her progress and fight for a CURE. Twitter link is @abbygracecure and Instagram link is abbygracecure.

 

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