Danika was born with the most common form of dwarfism Achondroplasia. At 6 weeks old she had to have emergency decompression surgery to largen the hole at the bottom of her skull. At the time we consulted with the doctors at A.I. Dupont hospital in Delaware after learning she needed the surgery. Dupont hospital has specialist that specializes in forms of dwarfism. After looking at Danika's scans they told us she wasn't stable enough to travel. So we had to have the surgery done at our local children's hospital, UNC.
She's now 18 months old and still has issues holding her head up. We learned almost a year later after seeing the specialist in Delaware, that instead of the doctor that did the surgery going down to C2 on her spine, he had went down to C4. This is why she has problems holding her head up. So to correct her neck from growing at a curve and pressing on her spinal cord we started using a neck brace. Despite all our efforts to correct this issue of her spine, neck brace and physical therapy, it didn't work. Because this doctor went down to far, her spine is now collapsing. Her second vertebrae is now pointing out towards her airway. The only correction for this is reconstruction surgery of her spine. They want to do either a halo, which consist of metal bars around her head to lift her neck up and try to correct it but she'd still end up in a neck brace 24/7 after months of being in the halo. Or they can place rods in her neck to correct this issue permanently but this will restrict her from being able to turn her head. This is a major major surgery and as a mother I want the best care possible. After her first surgery and the issues that have gotten us to this point, we will be traveling to Delaware to see the specialist that handles infants and kids with forms of dwarfism for any kind of major surgery.
A little about our family. We are a joined family, I like to say his, mine and ours, which is Danika. Three girls, 9, 7 and 18 months. We had no idea Danika had Achondroplasia until 4 hours after birth. We were upset as any parent would be, not because she was going to be little but just concerned about health issues. When Danika was born I gave up my career working at an eye doctors office to take care of her because shortly before I was to go back to work she had the emergency decompression surgery. Her dad is an auto body painter and continued to work. With lots of prayers, church support, family and friend support we made it through it. Danika then had issues gaining weight which landed her a feeding tube though her nose (NG tube) which then went to a gastric tube (G tube) that she still has. No matter what she's been through she's managed to always smile. She's full of personality and silliness. She always has such high spirits. She has brightened so many peoples day with her smile and personality. Danika has gave me a whole new family and new friends! She is such a blessing. I know I can't change the story God has already wrote although I wish I could tweak it a bit. No parent wants to see their child struggle in any way especially such a determined little girl like Danika. We will get through this with good faith, love, prayers and support.
This will help us tremendously. Even if you can't donate anything I'd like to ask you to keep her in your prayers and pray for healing! The prayers means more to me than anything else! The funds will get us back and forth from North Carolina to Delaware. Also help us when she has to have her surgery and our stay in Delaware during her recovery. I could never say thank you enough! Also Thank You for taking the time to even read about our little Danni bugs story!
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