“Your child has Schizencephaly.”
Hearing these words, left this precious baby girl's parents and family speechless and full of worry and tears. When this mama was pregnant with her precious baby, the little one had a stroke and the left side of her brain did not develop all the way, therefore, the spot that she is missing in her brain is filled with spinal fluid. When she was 6 months old, she was then diagnosed with Hydrocephalus and needed to get a shunt placed in her head. This condition was unexpected and came out of nowhere.Then one day she got very sick and started having bad seizures. She became completely unresponsive and lethargic. She stopped breathing and was life lined to Riley. They saved her life.
Before this little miracle was even born, the family was told that she would be paralyzed, be on a ventilator and a feeding tube her entire life and the doctor did not believe she would ever progress out of the newborn stage. They also diagnosed her with Optic Nerve Hypoplasia and would most likely be full blind.
Every day brings life. Every day brings hope.
Today Jocelyn sits up on her own, scoots, rolls, and crawls. Wherever she wants to go, she gets there one way or another. She plays with toys, flips pages in books and can say some words. And Jocelyn's eye doctor informed them a few months ago that she has very good vision, which absolutely surprised the doctor and staff as well! She has started eating baby food and other soft foods from a spoon.
“JoJo” has leg braces which help her stand on her own. STAND UP ON HER OWN! Before she had gotten the braces, if you even tried to help her stand up, she'd would pull her legs up, but now she can do it! She is able to stand for a short period of time with the help of these braces.
One of the not so great Schizencephaly cases turning out to be one of the better ones. Expecting the worst when being told by your doctor while you have this precious little life in your tummy and looking at her now....two years old and proving the doctors wrong day by day by day. This is what I call a living miracle.
There are still obstacles, surgeries and struggles this family knows they will face, but seeing the strength and happiness of this precious little girl, is sometimes all this family needs. This family knows how much more she's capable of, but unfortunately some of those opportunities come with hefty price tags. JoJo is very busy with therapies through First Steps, but they have tried to raise some money through selling t-shirts. All of the money that they raise goes straight into a bank account at Old National bank called Jocelyn's Journey/Denise Emmons. Money is only removed when it is being used for a certain situation, such as a surgery or therapy.
There are still obstacles, surgeries and struggles this family knows they will face, but seeing the strength and happiness of this precious little girl, is sometimes all this family needs. This family knows how much more she's capable of, but unfortunately some of those opportunities come with hefty price tags. JoJo is very busy with therapies through First Steps, but they have tried to raise some money through selling t-shirts. All of the money that they raise goes straight into a bank account at Old National bank called Jocelyn's Journey/Denise Emmons. Money is only removed when it is being used for a certain situation, such as a surgery or therapy.
Jocelyn is thriving, but there are also a lot of things out there that could help her even more. A lot of things that aren't covered by insurance. One therapy they really want to try with Jocelyn is Hippotherapy. This is therapy on a horse with a licensed physical therapist. Insurance will not pay for this because she is in First Steps (which provides several of the weekly therapies that she needs to have and have often). Hippotherapy is a therapy that helps kids with cerebral palsy (which Jocelyn also has which is keeping her from walking). It is known for improving children's motor skills drastically who have any type of brain injury resulting in poor motor skills. Each session is $130 and they would like to take her once every other week. It is in Carmel, Indiana. Any money that is not used on Hippotherapy will be used for future equipment or extra therapies she may need that insurance in fact will not cover. They are hoping they will need to purchase a walker in the next few months as Jocelyn continues to prove just how much of a fighter she really is.
I share this story with all of you because most of us have children, nieces, nephews, grandchildren, or know of children who we are able to love on and enjoy in our lives. And we count our blessings that they are healthy and happy. But sometimes God brings children in our lives that are even stronger than we are ourselves. They are who I consider the little ones God chose to show the world that strength comes not from money. Strength doesn't come from hatred. It doesn't even come from power. It comes from courage. And it comes from people that love them unconditionally and show them that no matter what obstacles in life we may face, love will NEVER fail you. Ever.
This family continues to try to raise money so they can continue to give their precious Jocelyn the life she deserves. They are selling shirts of all sizes, which they receive a $5 profit on per shirt. The shirt says “Jocelyn's Journey” with her picture on it, along with her website address on the back. These shirts are $9 each.
Feel free to check out Jocelyn's website at www.jocelyn'sjourney.webs.com
Feel free to check out Jocelyn's website at www.jocelyn'sjourney.webs.com
If you are interested in helping this little one grow and become the little girl that her family knows is possible, feel free to email me at sandy@sandyclarkephotography.com or contact me through facebook inquiring how you could help. I know they are grateful for any help, big or small, and would be extremely grateful.
And while you are at it, that child I mentioned that is in your life. The son, daughter, grandchild, etc. Go hug them. And thank God they are in your life.
- Sandy
