Brandon and Kaylee always had a desire to be a mommy and daddy. From the very start of their marriage they dreamed of the day they would become parents.
In the beginning, the wait felt normal and they knew it was just a matter of waiting in anticipation for the news that a little one was on the way.
Weeks went by. And then months. And then years.
For three years (one thousand ninety five days to be exact), they prayed and waited and anticipated.
At first, people would make the typical comments asking when they planned to grow their family and it wasn’t hard to give an answer. But as time went by, those same comments and questions would come and the pain of waiting deepened. It became a difficult, emotional journey that presented unique challenges. Throughout this difficult time, both of them grew and continued to wait for God to show them His plan.
Then, one day, God revealed that it was in His plan to gift Brandon and Kaylee with a child!
They were ecstatic to share the news with everyone and it seemed as if the whole world was rejoicing with them!
As Kaylee progressed in her pregnancy, a new blessing was discovered - they were having a BOY! The joy and excitement continued to grow!
They began planning for the arrival of their precious little gift by choosing an elephant theme for his nursery, registering for baby gifts and enjoying baby showers.
Finally, on March 25, 2018, little Grayson Scott Unruh entered the world and Brandon and Kaylee’s hearts grew about one thousand times bigger when they met their little gift face to face! He was the most amazing, perfect little gift and they felt like he was even more perfect than anything they ever imagined! And they were right - he was!
Just as any new parents, Brandon and Kaylee relished in all the joys of having a newborn baby. The wonder of how tiny he was. The softness of his skin. The sweet little baby noises. The snuggles. The angel smiles. The satisfaction on his little face when he had a full tummy. The unexplainable emotions of knowing he was theirs. The feeling that their hearts just may burst because of the love they had for him that grew bigger by the moment. All of those emotions that every parent feels with their new baby were heightened and felt more deeply because of the wait and anticipation of this little gift.
Some time went by and one day, they noticed that something didn’t seem right. They watched him more closely over time and their concerns began to increase as the days went by. Grayson was beginning to have seizures regularly. Brandon and Kaylee found themselves thrown into a nightmare of multiple doctor and hospital visits as everyone tried to discover what was causing the seizures. Hope would rise as it would appear as if a medication would work to stop the seizures, and then they would return and sometimes worsen. Other developmental issues began to be revealed that multiplied the concern and the unknown.
Finally, after a very long road of weeks and even months, Grayson was diagnosed with a very rare form of epilepsy called CDKL5. This genetic condition is so rare that doctors are often baffled at how they can help the patients control their seizures with medication or any other means. Grayson now has regular appointments every week with doctors and therapists to help him as he grows and develops. New things are being discovered regularly about how a child with CDKL5 can be helped. However, because it is rare, it is very challenging.
Brandon and Kaylee can use YOUR help to raise awareness to help Grayson and other kiddos like him that are dealing with the challenges of CDKL5.
Please take some time to go to the website for the International Foundation for CDKL5 research and learn more about it and ways you can be involved in helping to raise awareness so that research can continue to someday find a cure for this condition! You can find information here.
Also, please take some time to read this note written by Kaylee to better understand the struggle of being a parent of a child with CDKL5 and how we can be the biggest help and encouragement!