Our goal for Savannah

I struggled with the idea of doing a fundraiser. As a single mother, I took pride in the fact I have always been able to provide for my children. When I found out about Savannah's condition, I had to quit my job, and become her caretaker. So many changes were happening at once, and I was very uncertain about our future. While researching Savannah's Disease, I found out about a procedure they were doing for children that had Savannah's condition. It's a stem cell treatment, but is very costly. It broke my heart to know that I wanted this so bad for my daughter, but was unable to afford it myself. Pride got in the way of asking anyone for help, and I just couldn't do it. After praying to God. Spending more times than once kneeling beside my daughter crying. I asked god to just show me a way. So after months of research, and talking to other parents. I decided to do what was best for Savannah.

Approaching my 30's, I had no desire to be a mother of a newborn. I was a single mom of 2, and it looked as though it would be that way with Savannah too. My youngest daughter was going on 5, and my oldest going on 9. Honestly, I had felt I had paid my dues. The news of the pregnancy was devastating, but god made it very clear Savannah was meant to be here. I found salvation during a time that seemed hopeless. Surrendering it over to god, I felt comforted and carried on without fear. During my pregnancy, I was told I had miscarried twice. It was a roller coaster of emotions. But finally at my 10 week ultrasound, I was told I was having a healthy baby. As months passed, my health became unbearable. Any news from my doctor about my condition kept getting worse. At 41 weeks pregnant, I was finally induced. One day after my 30th b-day, February 9th, 2013 Savannah came into this world, changing my life FOREVER!!

 






Since Savannah was born, she has had 5 hospitalizations. Her longest stay was at 3 1/2 weeks old. Savannah had gotten RSV, and while there, her health took a turn for the worse. She was immediately transferred to the UNC Children's Hospital in Chapel Hill. I was told they had 24 hours to figure things out, or things may take a terrible turn for the worse. Fear, depression, anger are only a few of the feelings I felt. I cried praying to god to not take my child. With every test, the news got worse and worse. We had answers, but it was nothing we wanted to hear. The only comfort we had was knowing everything was manageable. My daughter was diagnosed with Septo-optic Dysplasia, Optic Nerve Hypoplasia and Diabetes Insipidus. She would be on many meds for the rest of her life everyday, and our road would not be easy. It was even suggested I adopt Savannah, which was the biggest slap in the face. But When you find a love like I had for that little girl, you fight for it.

So what is Septo-optic Dysplasia? Well it is the absence of the Corpus Callosum (the center part of her brain that connects the left and right hemispheres) It transfers motor, sensory, and cognitive information between the hemispheres. Savannah has little of that on the right side, lacking the ability to use her right arm properly. Savannah is also expected to have learning, mental, and physical disabilities. But it's still too early to know how bad it is.   

Her pituitary gland is smaller than it should be. So she has a low thyroid and most recently she became growth hormone deficient. This of course will require a shot a day, on top of taking her regular meds. She is hypothalamus deficient, so her body is unable to regulate her temperature, bowels or hunger. She is also unable to regulate her salt levels, and was diagnosed with Diabetes Insipidus (salt diabetes). In your Pituitary Gland, there is a hormone called Vasopressin, an anti-diuretic hormone. Savannah does not produce enough of this hormone. So, her brain cannot tell her kidneys what to do with water. Instead of holding onto water and distributing it, water goes straight through her. This causes her to have high sodium levels ALL of the time (which is dangerous - too high or too low sodium in anyone can cause seizures or comas,) and dehydration. Being as though this type of diabetes is so rare, there isn't a whole lot of convenience with this disease like the sugar diabetes. Her sodium levels are monitored weekly by having labs done at the clinic, and regular Dr visits. It's scary to think that because she is easily dehydrated, that not having access to water immediately, could kill her.

 Savannah is also blind, and at 7 months of age, she has not hit her expected milestones. She works with 2 different therapists weekly, a Physical Therapist, Occupational Therapist, and a specialist from Governor Moorhead (school for the blind) will be added. Typically the kids would go to the school, but the state worked it out to have them come to her. She has also been diagnosed with Sandifers Syndrome. This is caused by her reflux, and sometimes can look like seizures, which she is high risk for due to Schizencephaly: You know cleft lips? Savannah has a cleft brain. It is a rare birth defect characterized by abnormal continuity of grey matter in her brain. She is expected to have seizures her whole life because of this (we haven't experienced one yet) and her chances of developing Epilepsy later in life are very high.

To top it off she is anemic. Because she is blind, she trusts nothing near her mouth; for the exception of her bottle. We take things very slow with Savannah, but have hit a wall once or twice. She is unable to roll-over or sit up without assistance. Despite all she goes through, she is always happy. It gives me a new perspective on life, and I have learned to appreciate the small things.

 

Money raised will go to getting Savannah to Arizona for a stem cell treatment. By doing this, it gives Savannah a chance to have sight and improve her diabetes. The treatment itself is $6500. We also have to raise for the cost of traveling, and the accommodations to be by her side the whole step of the way. Any money raised above what we need for the treatment, will go into an account for Savannah. That money will be used for all of Savannah's needs that her insurance, and other programs don't cover. I will keep everyone updated on how much has been raised. Our goal is, 15,000 dollars.

I'd like to get my daughter the treatment by her first bday. I can't think of a better gift to give her. I imagine the day my daughter can look at me and smile. She is developmentally slow, and it's very hard to watch my daughter struggle with basic things. I feel sad when 10 minutes of working on rolling over or lifting her head becomes too exhausting for her. I don't expect that this treatment will perform miracles. But I do know that it improves the childs quality of life. Maybe just a little, and in some cases a lot. But even if it were just a little, it'd be money well spent. 



I am also selling wrist bands in support of Savannah. All proceeds go to her treatment!!!

I understand some people are financially unable to contribute. Just by sharing savannah's story, and getting the word out, would be greatly appreciated. Also, my mom created a fan page for savannah several months ago. You can stay updated with savannahs progress with the link provided: https://www.facebook.com/pages/Miracle-for-Savannah-Grace/354271894677722 I update everyone on savannah's progress, and I post videos and pics of her therapies and hospitalizations.

Thank you everyone for the support, and please be praying for Savannah's journey. I fully trust God will take care of her, because she truely is a miracle baby. If anything I'd like to raise awareness, and if I exceed my goal, help other families.