The Adventures Of Zoe Lush
Current update: Zoe recently turned six October 24 of 2016. In July she had a cervical spinal fusion of C2 to C5 with the removal of C3 and a small metal cage placed in her neck for her severe cervical kyphosis as well as spinal cord compression. Her neck was caused from nothing other than her bone condition called OI. She is now in a halo vest which has 10 pins screwed into her school for complete immobilization. It was supposed to be removed in October but there was not enough bone healing yet. We hope to have it removed in December.
On Monday, June 29th, Zoe Lush fell out of her high chair. For a normal toddler, although scary, would typically be a minor incident. Because of Zoe’s Osteogenesis Imperfecta the fall caused severe injuries which included a 4 four night hospital stay, broken ribs, black eye, broken arms, skull fractures, missing tooth and a 3/4” brain bleed (epidural hematoma). Although she has been released for now, she will need to be readmitted again to drill a hole into her skull to release pressure and drain the remaining blood. As you can imagine, the financial burden with multiple night hospital stays, surgeries and therapy as incredibly significant. As always, we are eternally grateful for all of the love, prayers and support we have received from everyone.
Here is a little more about Zoe’s adventure:
Before Zoe Lush was even born, there were signs of big trouble. Zoe's mother, Chelsea, got the news at her five month ultrasound. When the perinatologist gently pressed the wand down firmly on Chelsea's belly, Zoe's soft skull molded from a circle to an oval shape under the pressure of the wand. A closer look revealed further damage. Zoe's femur was in two separate pieces and many of Zoe's ribs were in multiple stages of fracture. Zoe's bones were already breaking in the womb. The concerned doctor looked up at Chelsea, "Mrs. Lush, there's something very wrong with your child."
Three months later Zoe entered into the world broken. She fractured her collarbone during the birth. Within Zoe's first 30 days of life, Zoe broke both of her arms and her leg, and then her right arm again. Zoe Lush was diagnosed with Osteogenesis Imperfecta, commonly known as Brittle Bone disorder.
Zoe has Type III, the most severe type of OI you can possibly survive. OI is a form of dwarfism. Arms and legs are often deformed from both the irregular, under-mineralized bone structure and repeat fractures. Many children born with Type III fracture their ribs simply from taking a deep breath. Some infants will pass away from respiratory failure, especially early in life. If a child with Type III does survive those first, formidable months, they will never grow much past 3 feet tall, and will likely spend most of their lives in a wheelchair.
At 3 months, Zoe was breaking so often, Chelsea had resorted to splinting Zoe herself because doctors were so unfamiliar with the condition. Often times doctors handle OI children like regular kids, causing even more breaks.
Zoe also has brittle teeth, eating anything but soft food can cause chipping. At age 2 she was able to get her teeth capped. Unfortunately, from this previous accident she will need more dental work. Zoe's ear bones are just as fragile as any other bone she has. Loud, piercing noises can shatter her eardrums.
Perhaps one of the most important facts about OI is that it does NOT cause mental delays. At a glance, many people see Zoe's physical deformities and conclude that she's also mentally handicap. Zoe does have difficulty speaking, and has the mind of an average 4 year old.
Zoe is as aware of the world around her as you and I. She feels her bones shatter the same as you and I would, only more often. Throughout her childhood Zoe will travel to strange places and have metal rods wedged into her delicate frame. The collective pain Zoe will endure in her life will make any of our toils seem insignificant. But the space between the hurt is filled with smiles. As you'll see below, Zoe never stops smiling. Together, we can dramatically improve Zoe's quality of life.
Hi, I also have OI Type 3. Zoe seems like a little trooper. I can tell her that things will get better. I am now 42 years old and I drive, run my own business. I live a fairly normal life and do pretty much the same as everyone else, except for a few things. Stay strong lite brave one. Hope this donation helps.
Please check with the Shriners of North America, we help children with OI, in fact our current ambassador has OI and is living a fantastic live with the help of the Shriners. We don't charge the families for any treatment and can provide medical treatment and durable medical equipment. Please call 1-800-237-5055 for more information (even the phone number is free :-) , we also provide free transportation and lodging if necessary) God Bless Zoe and I pray you make the call!
Hi, i dont really understand situation of baby Zoe is.. But i can see how she living her life. I have known very well to a Sanskit Grand Master, staying in Selangor,Malaysia..near to my home...i been seeking him for some of health problems, whereby he guided me thru only Prayers way to achieve the good health. And honestly,it works and i have found a strong connection with God soon after those prayers. He is not money minded as some Master will be. He will help wherever he can thru prayers, we only pay him what we can. So far he had told me many things that exactly happened in later. If you Faith, he might probably help Zoe to better (need to know exactly Zoe situation first), and if you willing to see him for Zoe, you may call me +60163422475
Zoe you such a beautiful little girl with lots of hope in your face.. i will always include you in my prayer as well ad your family too.. God Bless Baby Girl.. God always be with you..
Mom and Dad- You two are amazing. I can't even imagine the things you had to learn and adjust to as Zoe entered your lives. I had a preemie and it was difficult! I wish I could just hug you guys for being so strong!! Zoe is beautiful! Her giggle is contagious and her smile can light up a room!! She is going to go far in life. I find her to be inspiring. I heard you say that she has no problem telling kids to stop touching her wheelchair. Well that's what got me!! Zoe is not only a fanatic kid, she's an awesome girl! A female that can stand up for herself is powerful. You guys have a precious gem there!! Thank you Zoe for being all that you are.
I just wanted to ask if I can help I have O negative blood type and can donate to anyone. I have heard that blood donation from different sources can affect outcomes even with genetic issues. I also will donate money shortly, I also just want to ask if I might also help with donation. I can be cleared by Canadas blood organisation. I have donated blood a few times.
Hi I am Priscilla from Holland. And I have OI also. I find little Zoe really brave and adorable. Especially our beautifull blue eyes. And I know her pain. Everyone can say : I can imagen your pain, but no its not the same if someone has broke an arm or leg one time. And to the parents I want to say that they are really strong and I respect them so much because I had a really hard time having my son not knowing if he had OI as well. I was so scared that I stressed out of thinking that he would break something with every move. Luckely he is 5 now and I can handle my fear. And maybe it is even worse if you have Oi yourself because I know what it is. But on the other hand for you it is ( was ) completely knew. So again I respect you guys and I hope your family will be happy and wish you all the best!
She is absolutely beautiful. You guys are amazing parents.