This was written about two years ago, since that time Makenna has mastered holding her head up! Yay! She will soon start an experimental drug therapy. Details are not yet available for the public. The hope is for extension of life and positive quality of life. The funding for research lies completely on these 60 Rhizo kids' families. Please check out Makenna's Facebook at : https://www.facebook.com/MakennaLoyd/ For updates. The family also will be planning a fundraising event in the upcoming months. 100% of the funds will go to more research for this condition.
"This is a story I wrote shortly after we got Makenna's diagnoses. I have not shared it on facebook yet because it is so raw and personal, but now is the time for it to be shared. Now our voices will be heard, now we will fight for our little fighters!! #HopeforRCDP
Makenna’s Story
On August 29, 2013 I gave birth to a little girl that would open my eyes and heart to a new understanding of life. At two o’clock on that Thursday I began pushing and would soon meet my baby. My doctor asked me after she was here if I want her to be placed on my chest to hold and see her or to give her off to be cleaned up. Of course I said "I want her"! When Makenna came into the world my doctor was quiet, he could see something was wrong and didn’t want to alarm us. Our doctor quietly said I’m just going to hand her off to get cleaned up. Instantly my heart sank I knew from the second I stopped pushing and she arrived that something was not quite right. I don’t know how I knew, maybe it was God trying to prepare me for what was coming but I knew something was wrong with my baby. And my doctor had confirmed my feelings when he handed her off. Later that night Makenna’s pediatrician came to deliver the news of what they knew so far about her. They had noticed that her upper arms were shorter than normal, her feet were turned outward and very stiff, and her hips were stiff as well and they worried that they might be dislocated. She cried so much from all the pain she was in. Her pediatrician had told Mark and I that it was very possible we would be transferred to Arkansas Children’s Hospital. In the morning that’s just what happened. Makenna was taken by ambulance and we followed close behind. She was admitted into the NICU there where she would spend the next twelve days. This was the most terrifying thing I had ever experienced, seeing my new born baby hooked up to so many machines and not knowing what was going on. When she got to Children’s they quickly went to work on figuring out what was wrong. They performed an EKG on her, did ultrasounds, drew blood and many other things that make it hard on a momma to see her child go through. After doing an EKG on her heart the doctor found out that it was not fully developed and she would need to be put on oxygen to help her breathe. Her doctor told us that if she would have been sent home from Conway hospital she would have probably died from SIDS. In our family that is a very scary reality that hits way too close to home. The twelve days in the NICU consisted of trying to figure out how much oxygen she needed to be on, passing hearing and eye tests, and getting her to eat. After all that was under control her genetic doctor said we could take her home and the genetic blood work would be sent off to figure out her exact syndrome. It would take a couple months to get it all back. On January 13, 2014 we had an appointment with the genetic clinic to go over Makenna’s results. Her doctor told us she had a rare genetic disorder that was called Rhizomelic Chondrodysplasia Punctata also known as RCDP. As the doctor explained to us what was to be expected with the disorder my heart slowly broke. He told us that with RCDP there are about 53 cases known in the US. Then he said some of the toughest words I would ever hear, this syndrome is terminal for these children. Most children won’t live past the age of two and very small percentage make it to the age of ten. However there are some children between to the ages of six to ten still doing well. Most of these children do not walk or talk or even sit up on their own but show emotions when they are happy or sad. Most require feeding tubes( Makenna does not). These children have short upper arms, short upper legs, cataracts, develop seizures, troubles with weight gain, developmental delays, and hearing loss (and that's the short version of issues in these children). Makenna has a little bit of a different story then the average rhizobaby, as she is gaining neck strength and we believe she's so close to holding her head up on her own. She is the only one known to be born without cataracts. All these babies have been born with cataracts and had to endure surgery within the first few months of life. Makenna did not, her doctor that specializes in her disorder is quite amazed and baffled at that fact! Makenna also has no spine issues, many kids have to have a decompression of the spine or develop some type of spinal problem. Her spine actually has more than plenty of room to move, which is a major blessing. Makenna is doing extremely well. She does not require a feeding tube, and no hearing loss, but this can change quickly in a days time. Her little body is so fragile that one small cold or any infection could put her back in the hospital. After hearing my child would not have the full life I wished for her I was devastated, but when I look into her eyes I know that God has a special plan for my little girl. We may never know why this happened to her but we do know that we will cherish every second God grants us with her. We will enjoy each smile, laugh, and moment we are blessed with, for Makenna is our special angel. She is one of the strongest people I know. She wakes up everyday fighting for her life with the biggest smile on her face. I love my little fighter. Some people wait their whole life to meet their hero, I gave birth to mine. It’s amazing to see how much love and support we have already received for our tiny baby. Please pray for her and her journey through life.
Thank you for your time,
Hannah Loyd"
