Testimonial 2
We are the Holladay family from South Carolina. We have been blessed with three sons. Our oldest two sons are Taylor who is 10 and Landon who is 4. Our youngest son Ethan was born on July 9, 2007. We learned soon after his birth that he has RCDP. We were devastated and unsure what the future would hold for our family. The doctors did not give us much hope for Ethan. We decided early in those first weeks of Ethan’s life that we would not accept what the doctors said. We are not in denial, we just know that Ethan will be what GOD wants him to be and he won’t be limited by what man says he can or can’t be. Ethan has surpassed all expectations. We see improvements every day. Ethan did have feeding issues at birth and the hospital that he was in researched RCDP and told us that they felt like a feeding tube was Ethan’s best option. Ethan has physical, occupational and speech therapy every week. It seems like a lot, but we are willing to do anything that we can do for Ethan to give him the best opportunities in life. We will never limit him because of this disorder. We know that GOD makes no mistakes and we are thankful that the LORD chose us to be Ethan’s parents.
Herb and Melinda Holladay (February 1, 2008)
Please visit Ethan's website at www.caringbridge.org/visit/ethanholladay
Testimonial 3
We are the proud parents of 2 children born with RCDP Type 2. Our oldest child Jake is 5 and our daughter Jordyn is 2.
Jake was diagnosed when he was 6 months old. The doctors told us his future was grim. They gave him a life span of 2 years and now he is 5.
Jake is still growing, he currently weighs 28 pounds and is 3 feet 2 inches tall. He wears contacts due to cataract surgeries. He also has a feeding tube that supplements night time feeds.Jake also drinks over 3 eight ounce bottles of Pediasure daily and eats pureed foods. Jake has a very busy schedule, he is currently in his 3rd year of preschool and also has therapies throughout the week. Therapies are helping Jake learn to sign for communication and also helping him learn to walk via a "gait trainer". Jake has already surpassed his goal of walking 200 FT. Jake is a very happy little boy,he loves music,Barney,The Miami Dolphins and light up toys.
Jordyn is 2 years old. She has had cataract surgeries, tethered cord surgery and recently had tubes placed in her ears along with the removal of her tonsils. Jordyn also has her feeds supplemented at night time with Pediasure via her feeding tube. She also drinks bottles of Pediasure with a special thickening nectar added to prevent aspirating and eats level 2 baby foods. Jordyn attends weekly therapies at the hospital with her brother Jake. Jordyn has the sweetest smile,she loves lights, music and her favorite story-telling bear, TJ Bearytales!
Jeff and Mindy Cirner
Testimonial 4
We are the van Zuijlen family from Haarzuilens, a little town in the Netherlands. We have three beautiful children. Our first born is Eline, she is now 7. Steven came second, he just turned 6 (January 26, 2002). Jeanne is our baby, she is 1 (June 15, 2006). Eline was born on June 16, 2000 and three days after she was born we found out that there was something strange. After 3 weeks of research we heard that she has RCDP and had about 6 weeks to 6 months to live. We decided immediately to take her home and give her as much love and care as we could. After the devastation of the news it became clear to me that this was my most important task of my life. God gave us Eline and all we needed to do was love her. So we did and we tried to listen to every little signal that she would give us. We eventually learned how to interpret her language and signs. By doing so we found out how pure she is and how much love she has to give. Our little angel has touched so many hearts in the past few years.. We accept that every day she is here on earth is a gift from God and I thank Him for that every day. Since Eline has survived for so long already, the doctors see us as the experts for her well being. This means that we don’t have to spend a lot of time in the hospitals anymore. Eline is way passed the baby stage and knows exactly what is going on in her world. She learned how to take her food by herself. She learned how to make clear she is in pain or hungry or just bored. And we see her making choices of her own with her eyes and she has a magnificent sense of humor. We know that Eline lives with us in spare time and we are just grateful that this time with her has been given to us.
Pedro and Wies van Zuijlen (February 3, 2008)
Testimonial 5
We are the proud paents of Cameron who was born on 22nd October 2005. At a routine antenatal scan at 20 weeks we discovered Cameron's upper leg bones were shorter than they should be and after referals to St Marys hospital at Manchester,and the genetics team,we soon discovered that Cameron had RCDP. We could only remember the doctor using words like 'retardation', 'handicapped',and 'termination', we were devastated.After being told he could be stillborn, or die in the first few weeks of life,the fun and excitement had gone from the rest of the pregnancy and we were left with worry and anxiety.
When Cameron was born, it was amazing-he was beautiful. We soon found out that he had been born with pneumonia and after recovering from this, we found he had cataracts,hip dysplasia and feeding problems. When Cameron had his cataracts removed,he had real problems coming round from the first anaesthetic and we were told that he also had a very narrow airway. So far Cameron has done very well and likes giving us cheeky smiles. He now has a little brother who holds his hand when he cries and gives him lots of kisses. We love Cameron very much and just one little cheeky smile or a giggle melts your heart.
Claire & Craig Stirzaker (February 21, 2008)
Testimonial 6
Hi. We are Chris and Amy Iaia from Holly Springs, North Carolina. Our daughter Natalie Jane Iaia was born April 10th 2003. She was born a very healthy 5lbs. 8oz. We found out at 35 weeks pregnant that our child was "not normal". Her femur and humerus bones, through ultrasound (sonogram) images, did not measure to the accurate lengths of a baby at that stage.We were given a "prediagnosis" of achondroplasia (common dwarfism) at that time. Natalie was at this time our first child, and we had no prior family history of any type of dwarfism. At first we had a difficult time adjusting to the fact that our child was not going to be "normal". We did tons of research, even went to meet with a local family of Little People to get an idea of what to expect for Natalie's future. It was a huge relief for us, and we knew she would be ok. So we spent the next few weeks preparing ourselves to raise a dwarf. We joined the LPA online, got so excited about planning trips to the LPA conventions, even bugged all the doctors who specialize in dwarfism.April 10th came slower than I anticipated. It took forever for that LITTLE girl to arrive. (LOL)
We were so excited when she was born. We felt we were all prepared and ready to deal with what we were blessed with. Then the dreaded occurred. We found out a few hours after her birth she was RCDP Type 1. She was given one to three years to live. She immediately had her transferred to UNC Medical Center in Chapel Hill, NC for further testing and diagnosis. Natalie stayed only a few days in the hospital and was released to go home, a healthy little RCP baby. She has been a healthy little girl since birth, and we really have not had any major issues with her health.Natalie brings a smile to everyone she meets. She is so very joyful and full of life. She will forever be our little "big" girl.
Christian & Amy Iaia (February 21,2008)
Testimonial 7
We are the Thomas family from Sylacauga, Alabama and the proud parents of two beautiful boys, Taylor (4 years old) and Jackson (3 months old). Taylor does not have RCDP so we were surprised when Jackson was born to learn that he had this disorder, which of course we had never heard of. There were no anticipated complications during our second pregnancy so the RCDP discovery was quite a shock. Jackson's short arms led to the discovery, which irionically, had just been seen at that hospital several weeks earlier when Ian Ellis was born. We consider the Ellis family to be such a blessing because they were able to offer us support and comfort in the early weeks when we felt so alone and information deprived.
Jackson has hydrocephalus (no shunt required), contractured legs (which are slowly beginning to relax), limited movement in his arms (but they are moving more everyday!), moderate to severe hearing loss (we are soon being fitted for hearing aids), and bilateral cataracts (we have just completed the second surgery to have them removed and are being fitted for contacts). With all of these factors, Jackson is still a happy baby on most days and constantly wants to be held and loved. We were once told that he would never be a loving child and we are so proud that he is proving them wrong on yet another of their predictions. Jackson has far surpassed all of the negative expectations of the doctors from the NICU and proven time and time again that he has far more potential than anyone ever dreamed possible.
For our family the RCDP diagnosis has turned out to be such a blessing, rather than a negative event in our lives. God has blessed us with two beautiful children and there could never be anything negative about that! The fact that Jackson has special needs has led us on a journey where we have met so many wonderful people and Jackson is witnessing to far more people than I ever could in my lifetime. While we wish that research was more advanced than it currently is, we are proud to be in the company of these other great RCDP families.
(Gregg and Tracey Thomas April 4, 2008)
Testimonial 8
We are the Limmer family from Baltimore, MD. We have a healthy 3 year old daughter and on Feb. 19,2008 we had a baby boy with RCDP. We first found out about Joshua's condition at a follow up sonogram at 23weeks. We were told that Joshua was suspected to have a form of dwarfism, but were asked to follow-up the following week with a doctor who specialized in skeletal dysplasias for another sonogram. After that sonogram we were told that Joshua probably had one of 3 conditions: Conradii Hunermann Syndrome, RCDP, or Zellweger's Syndrome. All three of which have a poor-lethal prognosis.
Over the course of the pregnancy, after multiple sonograms it was decided that Joshua most likely had RCDP. This was evidenced by short long bones, calcifications at the knee and elbow joints, and also along the entire length of his spine.
When Joshua was born, he was immediately intubated with much difficulty and placed on a ventilator with nitrous oxide for his breathing. We later learned that he had a narrow trachea which caused the difficulty with the intubation. We also found out that he had underdeveloped lungs and a small chest cavity. Despite all the efforts that were being made, Joshua's condition continued to deteriorate and he passed away on Feb 20,2008. After Joshua's passing it was confirmed that he had RCDP type1.
(Kirk and Jennie Limmer April 24, 2008)
Testimonial 9
Hello, we're the Miller family from Gisborne, New Zealand. We have two sons, Seth who is a healthy, normal 3 year old, and our special little one, Hayden who is 6 months old. Hayden was born on Dec 28th, 2007 and after birth it was discovered that he had a rare growth condition RCDP. The doctors were unable to give us a lot of information because there has only been one other RCDP child recorded in New Zealand in the past 20 years.
The life expectancy and development expectancy for Hayden is low, but we have seen him improve in ways we didn't think possible. He's so alert and happy. He responds to the love and prayers he receives by brightening our lives and teaching us all to have faith in God's will.
Please visit Hayden's CaringBridge page and leave a message, we'd love to hear from you.
(Jessica and Robert Miller June 29, 2008)
Testimonial 10
"We are the Boekestyn's from St Catharines Ontario Canada. We have 4 Children: Felicia 1993, Mitchell 1995, Sean 1998,and Kendra 2003.
Sean has Chondro Dysplasia Punctata. He was born with bilateral cataracts and had them removed at 10 & 12 weeks. At the time the Drs. assumed it was just a rare and random case of Cataracts. It wasn't until he was almost 1.5 years old that we noticed his arms didn't fully extend at the elbows. After further investigation it was discovered that he indeed had CDP. Sean is a very active child that brings alot of joy and laughter to our house. He is currently at about a 5yr old level mentally and does attend all day school in a regular school. He did Kindergarten for 3 years and did grade 1 for two years and will go on to grade 2 in Sept 2008. He has a personal EA with him all day for one on one attention and his Occupational Therapy and Physio Therapy happens at school on a bi-weekly basis. He currently doesn't receive speech therapy but continues to progress in speech because of school. He gets his own modified curriculum and we are pleased with how that is going as he continues to make progress,to our utter amazement even to the point of being able to sound out and read some short (3 letter) words this year. He is quite short for his age and his hips and elbows are a little restricted but he compensates well and is able to run around and even climb on some things with minimal assistance. The Drs are concerned that at some point he will need hip replacement surgery because his hip sockets are misformed and will likely continue to get worse but for now he has no pain so the Drs say they will not intervene until absolutely necessary.
This year we requested to have Sean play in the local houseleague soccer with Kendra and he is loving it and doing very well. (although he keeps running off the field during the play for a hug and a cheer from any family members who are in attendance.) We have learned patience because the Drs are unable to tell us exactly what the future holds for Sean. He is treated very well by his siblings and other kids at school and also gets special treatment from both sets of Grandparents. There are lots of appointments and with our other children we are kept very busy. We consider it a challenge and yet have been very blessed by God to have this special little boy in our family."
(Boekestyn Family July 07, 2008)
Testimonial 11
Our daughter, Callie Amber Aspley, was born on 26th September 2007 after a completely normal pregnancy. We were not aware there was anything at all wrong for a couple of dyas as the hospital said the feeding and movement preoblems she was having were due to a traumatic birth. When bathing her a midwife noticed her arms were short and we were then referred to a bone specialist who confrimed her legs also had contractures. I noticed her cataracts at 5 weeks and our GP confirmed them at 6 weeks and she had them removed at 3 months and 7 months. Her sight is greatly improved and she wears contacts. It acutally took until July 2008 to get the RCDP diagnosis and we were understandably devastated. She continued to have feeding problems and at 5 months had a feeding tube fitted which has recently been replaced with a button. She is now 16lb 14 oz and is 66 cm's long(with her knees bent). She is a very loving happy little girl who loves helium balloons and lights, she can move her arms very well and has achieved a great deal more milestones than the doctors said she would.
She is always smiling and laughing and continues to provide us with much joy.
(Marie and Dan Aspley January 2009)
