Hi everyone! Meet Harper. She's 2.5 years old and continues to prove her doctors wrong most days despite the odds. Harper was diagnosed with Lissencephaly at 3 months old. After a perfect pregnancy and delivery, a very rough first couple months of constant crying and lack of eating, it was middle of the night, that Monday night, when Harper started having seizures and was rushed to the ER. The coming hours and days would blur together as we received life altering news that our precious first born had a very rare brain malformation.
Lissencephaly means "smooth brain" and effects all aspects of Harpers life. She is 100% g-tube fed, she cannot sit or stand, talk, or do anything for herself. Daily, Harper struggles to control her body movements most of us take for granted but has learned how to roll over and get around the room on her own. She is on several different medications to control her seizures and is watched closely by a team of specialty doctors and services. Harper receives a variety physical, occupational, feeding, and visual therapies weekly to help her succeed in any way possible. The lifespan of Lissencephaly is typically 2-10 years.
We do not know what caused this rare malformation. We've done genetic testing, and we didn't find anything. Not one faulty gene in her. Making her even more precious. Since the day of her diagnosis we have felt so much peace and covered by the Lord and trust in His plans for our daughter. We've learned to pray a whole lot, lean on family and friends for support during the rough times, and always shout our love for Harper in order to raise awareness for rare diseases. Harper recently became a big sister and it has been our greatest joy watching this amazing sister relationship develop over the last 6 months 💗
Love and blessings,