Today’s post comes from a passionate area mother who grew up in Bertha and was one of our grand prize winners of our Moment’s Matter contest in January for a photo and story that she submitted of her son Easton. He now benefits from our new offering of Aquatic Therapy twice a week. Read her story below….
By: Chelsey Braaten
I want to introduce you to a disease called Osteogenesis Imperfecta, otherwise known as Brittle Bone Disease. I had never heard of this disease until almost three years ago, and now it is my life. I was at my routine twenty week gestation ultrasound when the medical staff discovered my baby had shortened and bowed femurs, I was then sent on to a level three ultrasound in St. Cloud with a Perinatologist, someone who specializes in babies in utero. The physician discovered my baby had a skeletal dysplasia, although what type was still undetermined. We were followed closely throughout my pregnancy and at 36 weeks, I was transferred to the Twin Cities to await my baby’s arrival.
At 37 ½ weeks I gave birth at Abbott Northwestern to a beautiful baby boy, Easton Bradley Braaten who weighed 6 lbs. 9oz. and was 17in. in length. He had many medical concerns, but I was so relieved to see my beautiful baby breathing and alive. He was born with a high femur fracture and at eight weeks, he endured another femur fracture that helped determine his diagnosis of Osteogenesis Imperfecta Type 3. Type 3 is the most severe among children who survive the neonatal period.
Some characteristics of this disease are blue scalara (where the whites of the eyes are blue in tint), shortened and bowed limbs, short in stature and frequent fractures. Since his birth, Easton has had multiple surgeries, a port-a-cath placement for his infusions (a drug called pamidronate that is infused every 12 weeks to strengthen the bone as it grows), ear tubes (twice), teeth capped (twice), inguinal hernia repair, undesended testicle as well as two sedated tests.
In our future, we know that Easton will have future rodding surgery where they will straighten his femurs and tibias and place them on telescoping rods to straighten them to have maximum functionality. Aside from all of the medical terms and conditions, Easton is a fun-loving, spontaneous, energetic and funny little three-year-old boy who portrays bravery and strength. Easton may have an awful disease that will affect him the rest of his life, but we will not let this disease control him. We strive to give him the most normal life as possible by letting him do what any other three-year-old boy would want to do, besides the fact of telling him to be careful at least 100 times a day!
Our life is crazy busy with doctor appointments, follow-ups, surgeries, and therapies, but I would not change anything for the world. Easton has blessed us in a way I cannot explain. He has taught so many people so much about life and how we are not in control. We try to take things in stride and accomplish things day by day. Easton is truly a walking little miracle that fills our life with laughter, joy, and may times tears.
May 6th is a BIG day for our family that includes a lot of YELLOW. May 6th is National O.I. Awareness Day and we encourage everyone that supports, loves or even admires Easton, and all the children living with his disease, to wear yellow and spread awareness. I am always in awe at how much yellow and how much love and support we have gained in just three short years. Through this life experience, I have learned that no child was handpicked or chosen with what he or she has been dealt with in life. When you see someone with a disability, send a smile and know they are someone’s miracle and blessing! I hope you will join our family in making May 6th a memorable day and wear YELLOW to advocate for awareness for children like Easton with Osteogenesis Imperfecta.