Hello Friends,
Meet my daughter, Avalynn Walde. Avalynn was born February 25, 2015, she arrived in this world beautiful, cared for, very loved, but with some pretty major difficulties. Avalynn has a lethal form of skeletal dysplasia. This condition has left her with several abnormalities, in her skeleton. She has fused bones in her hands, spine, and rib cage. She is missing the lower half of her spine, as it never grew. She has a club foot on the left side, and twisted foot bones on the right side. Her hip bones are smaller than they should be. Her rib cage is also too small in diameter and length, which prevented her lungs from developing. She is basically trying to support her body with half a lung. She is also incontinent due to the lower spine missing, and may become a paraplegic as she grows and her spinal chord gets cut off. Her heart is also trying to help compensate, but its pressure is high, the atriums aren't doing their job properly to keep the flow right, and it is slowly enlarging.
As she continues to grow her lungs will grow also, but because of the small, abnormal ribs, her lungs will ultimately be constricted. As they are constricted, and she won't be able to support her growing body. As the doctors said, "It's trying to support an infant body with newborn lungs, it just doesn't work."
Avalynn has one chance at survival. It's the Verticle Expander Prosthetic Titanium Rib Surgery, or VEPTR. It will act like reverse braces on her ribs, allowing them to grow as she does, and thus giving her lungs room to grow as well. She needs to be at least a year and a half to get this surgery. Once she has it, she will need surgical adjustments ever 4-6 months until she reaches 21, or her skeleton stops growing. Each surgery means a 6 week hospital stay. Only 9 hospitals in the USA perform this surgery, as it is rare, and was only developed in 2005. They can perform it in San Antonio, Texas. Avalynn lives in Houston. So there will be many travel expenses, unless Cody and I are able to find employment and move there.
We hope that Avalynn will be able to survive long enough to receive this life saving surgery. However even after that surgery is performed she will have many obstacles to overcome. As of now she would not be able to walk, or even crawl, she will be in a diaper and on oxygen and pressure and a feeding tube her entire life.
Cody and I were completely shocked at the difficulties Avalynn was born with. I had normal prenatal care, including ultrasounds and numerous doctor's appointments. No-one ever suspected a problem. Even after Avalynn was born my OBGYN, went and looked over the ultrasounds, and knowing Avalynn's difficulties, still saw no signs of it. Unfortionately this fequently happens with skeletal dysplasia babies.
Avalynn has been living in the NICU at the hospital since her birth. Cody and I have started hospice and end of life care, and so should be able to take her home soon, and give her the same medical care there. She will continue both her concurrent and hospice care and therapies, meaning we are treating her for life and death.
Cody and I LOVE Avalynn with our whole hearts, and think she is perfect. (Just look at the pictures of the little cutie!) However, we do need help. Please find it in your hearts to help by sharing this and donating. We will have astronomical hospital bills and travel expenses, along with the funds needed to care for a specials needs child. We are both in college, and I lost my job because I was so sick with the pregnancy, and will now be giving round the clock care instead of returning to work. Cody has only been able to find part time employment, though he continues to search for additional employ. Every little bit helps!
Please pray for Avalynn, along with Cody and I. Pray for comfort and peace, and for the Lord's will. We thank you in advance for your help!
