Nessa's Bone Marrow Transplant 2015

Vanessa has been through so much and through this campaign we are not only trying to raise money for the lengthy hospital stay but we want to raise awareness. If you are able to get a T Shirt please send in happy pictures wearing it so we can show her how much love and support she has. We will decorate the hospital room with the pictures to keep everyones spirits up. We also want raise awareness for SCID, its a scarey disorder and has caused a lot of pain. Many states screen for this, however NC (where we live) is not one of them, if it was a lot of suffering for Nessa could have been avoided. Nessa also suffers from other conditions that have taken a toll or her but she is such a strong and happy little girl! This is Vanessa's Story

Vanessa aka “Nessa” is a beautiful little 2 ½ year old girl, with the heart of fighter. In her short life time she has seen more doctors than most people have in their entire lives. She has endured endless test, 100’s of finger pricks/blood draws, multiple X Rays, a spinal tap, 2 bronchoscopies, MRI, CAT scans, endoscopy, colonoscopy, 3 surgeries, about 6-10 medications daily, and about 20 hospitalizations at ECU and Duke University Hospital. This is because of how incredibly unique this little girl is. All these test have led to multiple diagnoses; a chromosome 22q11.22 micro-duplcation, growth hormone deficiency, failure to thrive, hypotonia, severe reflux (resulting in a G Tube), chronic lung/gastro issues, she is blind in the left eye from a virus when she was 1 ½, and most recently (and severely) SCID (Severe Combined Immuno-deficiency).

She has taken all of this and fought through it. She was hospitalized in 2014 for her 2nd Birthday and Christmas (and Valentines Day and the day before Thanksgiving). When she’s there she misses her big brother, Sean. Sean’s a 4 year old little boy who has always been there for his little sister, he loves her more than anything in this world and she does him. She also misses her Daddy, Nana, and German Shepherd named Sophie. They do get to visit but it’s not the same, it’s not home. I, her mom, usually stay with her at the hospital were we cuddle and she watches Nick Jr. while I study and we go on occasional wagon rides (depending on the precautions). We skype her dad and brother, sometimes Nana and Sophie too. She deals with the 4 hour vitals and all test, the nurses and the doctors, the therapist and everything else with a strong face and few tears. She doesn’t cry for blood work or IV’s and she “helps” with vitals. She even puts her own meds through her G-Tube (with a little help). They all call her “the perfect little patient.”

Her father and I recently moved the family up to Burlington, NC to be closer to Duke Hospital, it turned a 4 hour drive into less than 30 minutes and made visiting at the hospital MUCH easier. Her brother likes it up here, the schools are decent, and her dad got to transfer his job so we were lucky.

Yesterday, March 27th 2015, we found out that Nessa also has SCID or Severe Combined Immuno-Deficiency. We don’t know much about the condition yet, except that it is an answer to a lot of questions. Most of Nessa’s hospitalizations have been because of her immunodeficiency (she can’t fight off small viruses most people don’t have problems with), we just never had a name or a cause. It was first believed that she mimicked DiGeorge Syndrome patients, who have a DELETION on their 22q11 chromosome rather than a micro-duplication, like she does, however now we know differently. SCID is a totally separate diagnoses, it’s a whole other battle that she has to fight, and it will be her hardest yet.

Nessa is going to have a little sister in early May 2015, when she is born they will test her cord blood to see if it is a match for Nessa. We are very hopeful that it will be, there is only a 25% chance, but that’s still a chance. If the cord blood does match we will be able to do a cord blood transplant to give her a better immune system. If not it will be a bone marrow transplant. They will both include some chemo treatment, which will be really hard on Nessa. After chemo is complete they will go through with either the cord blood or bone marrow transplant. The first few months are risky, and completely terrifying. She has a lot against her, the viruses have taken a big toll on her but she’s a fighter and is going to get through this.

Nessa has taught us so much. She has taught us to cherish the small victories, to love every minute with our kids, and what real strength is. She has taught us to be so grateful for her and her brother. When I look at her brothe running, playing, talking and doing everything little boys are meant to do it makes me so happy. It hurts to see Nessa struggle, but it will warm your heart to see her brother sit there with her and teach her how to do things at a pace she can go. She loves to color and she loves music. She does have issues sharing, and if her brother has a toy or we have a cell phone in our hands she will assume it is “hers” and through an all out fit until someone caves, like every 2 year old. She is mainly tube feed but when she’s feeling good she loved to eat noodles and soups, and she’s pretty picky with everything else. She will watch Curious George or Barney all day if you let her, and her and her brother will argue over the remote if he’s trying to watch his the Avengers or Power Rangers. If the “Wheels on the Bus” is playing then EVERYONE has to stop had do the hand motions and sing, no matter what you are doing. The same applies if she decides it’s time to play peek-a-boo. She has a stuffed giraffe from a recent trip to the zoo and it seems to go everywhere with her.

We have almost lost her a twice. A couple days before Christmas Eve her immune system (the small one she had) attacked her red blood cells, resulting in a very scary night at the PICU trying to find blood. As a mother your worst fear will always be losing your child, whether they are healthy or not. Sean, her brother, is known as a “typical” child, he has no medical problems or disabilities and I still worry like every mother does. I also worry about other things “typical” moms do, him getting his heart broken, staying in school, making good decisions, and everything else. I want an opportunity to worry about Nessa like that, and after this transplant that could make that happen, which is what we are trying to focus on. She has such a strong heart and so much more to experience.

Any help is greatly appreciated, we understand completely if you cant but we ask everyone said prayers and good wishes her way!

Thank you all :)

Charlie, Brittany, Sean and Nessa <3