From the moment Emma was born she has been a strong little girl. Born at 30 weeks gestation she lived in the NICU until she was well enough to join her family at home. Emma experienced minor developmental delays such as walking late and gross motor skills. But for the most part was a happy, healthy girl.
When Emma was 5 she experienced her first knee problems. We were walking through Wal-Mart and Emma suddenly fell to the ground crying. She was holding her knee and kept saying that it "popped". This was the beginning of Emma's chronic knee dislocations. In the next months the "popping" became more frequent - her knee cap was extremely loose and could dislocate by just moving it with your hand.
Upon consulting an orthopedic surgeon he was unable to find any medical journals that documented Emma's condition. After researching and partnering with his colleagues our doctor proposed a plan to us. He determined that Emma's was "valgus" or "knock-kneed". At age 5 Emma underwent a surgery where plates were placed on the inside of her knee and screwed in to help her legs grow in the right direction. At this time they also tightened the ligaments in her left knee.
After months of physical therapy and basically reteaching Emma to walk again the angle at which her legs were growing was corrected and the plates were no longer required so they were taken out. Our doctor warned that Emma's condition could come back but we were optimistic.
Fast forward to age 7, 2 years later, and Emma's knee pops. In our minds we wanted to believe that it was a fluke, but no matter how much we hoped reality set in rather quickly. Emma's dislocations continued and we tried to strengthen her knees through physical therapy but with no success her knee broke one day after getting hit in the back of the leg. Recovering from this took months. She was wheelchair bound and relied on her walker to get around. Her pain level was extremely high but she endured it with her beautiful smile.
We were now living in a different state and after much research were able to find a doctor 3 hours away in Denver, CO at the Children's Hospital who diagnosed Emma with another condition.
I remember when Dusty and I first heard the term. We had just had multiple x-rays done, an MRI, and other tests. We were sitting in the doctor's office waiting for him to come in with the results and we overheard him in the hallway with one of his students. The words he spoke were "this is miserable". Dusty and I exchanged glances but weren't sure what he was referring to as he could have easily been talking about another patient.
When he entered the room he proceeded to give us the news that our daughter had "miserable mal-alignment syndrome", MMS, as well as the valgus/knock kneed condition. He explained that MMS means that her tibia bones are rotated outward and her femur bones were rotated inward. This combined with the knock-kneed and her weak knees was causing her to dislocate and have excruciating pain. The doctor spoke with us of what procedures we could do help her. To fix the MMS it would require cutting her leg bones and resetting them to the proper angles. She would be cast from the waist down and it would take over a year to recover.
The pit in our stomach's could only be described as "shock". The shock of a parent who wants to take the pain and anguish away from their child. The shock of a parent who would give anything for their child to be able to be a normal kid - to run and dance, to walk up stairs, to go sledding.
The doctor informed us that usually this condition presents itself when children hit their teens and at that point they are old enough and at a point in their growth where the "bone-cutting" surgery is successful and safe to do. Emma, at age 7, was possibly too young for this procedure.
After further testing and prayer we decided along with our doctor that Emma was in fact too young and that we would perform a surgery similar to what Emma had done at age 5.
On May 5, 2013 Emma had plates put in her left knee. The muscle above her left knee was cut about 4 inches up the leg and used to keep her knee cap in place by wrapping it around her knee cap and attaching it to the tendons and ligaments in the knee. She was bed-ridden for 2 weeks and in horrible pain. She was such a trooper and endured physical therapy that would retrain her muscle to communicate with her brain. It was extremely important that we immediately started working with her muscle to help it work again because once you cut the muscle it will basically die and never work again if you don't retrain it - basically use it or lose it.
It is now December and Emma's valgus has corrected to the point that she no longer needs the plate in her knee. The left knee is hurting her and the doctor thinks the screws might be hitting a nerve. She also has fluid in the knee that has been there for about 3 months. We are not sure why the fluid is there but are hopefully that once the doctor gets in there that it will go down.
Her right knee has also begun to dislocate - it actually dislocated while she was at physical therapy for the left knee. She was doing stair exercises and the right knee popped and she fell down some metal stairs which literally made the physical therapist freak out! We are faced with the decision to either go in and do the muscle cutting surgery on that leg or to try physical therapy to strengthen it.
Currently, Emma needs to go in and have the plates in her left knee taken out. We have chosen to try physical therapy first on the right knee before cutting in to her again.
Having moved again, we are now 4+ hours, depending on roads, away from Denver. All of these surgeries and the travel, which often requires a hotel stay, are expensive. Both Dusty and I work but our medical bills and travel expenses combined with having 3 growing children have overcome us and we need help.
We have been hesitant to ask for help as we feel that there are other people out there who may be suffering worse than we are. But as I type this story about Emma and look at the picture on my desk of her as a little 2 year old I am overcome with tears as I reflect on how much she has actually endured and suffered in her short life. She is precious to us and to God and is such a strong person. We know that even though she will most likely endure knee problems for her entire life that she will be stronger for it and will be able to have a greater compassion for individuals who are suffering physically. She understands what it is like to be different from other kids and to have to explain where her scars came from. She is such a caring child and is always concerned about other people and if they are o.k. Anyone who comes in contact with Emma will leave happier and more grateful for their life. We are blessed beyond measure to have been given the chance to be her parents!
Our plea to anyone reading this is that, if you are able, that you help us so that we can pay for the many expenses we have for Emma's care. Our hope is that one day we will be able to pay it forward and help someone else who is in our shoes.
May God bless each of you for your generosity.
DonationsSee top donations
- Erika KARNIK
- Joe & Julie Anderson
- Peggy O'Connell
- Ron & Soozi Burke
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more