The journey with Philip Ryan has been extraordinary. I have trouble just starting to write. I have not kept a journal but do have all of his records. He is an amazing boy. We love him so very much. He came as a little teacher for everyone who is willing to receive what he has to offer. We have had many terrific losses.
His family is April (mom), Philip (dad ) and Alanna (sister). Alanna is about to turn 18. Our lives have centered around Philip Ryan and as a mom, I have lost time with Alanna when she was growing up. Alanna has a perspective many teens do not. She has sung to her brother, worried over him and loved him with all her might. She has lost the attention of her parents. She also has lost her parents to a divorce. She has lost her home in a foreclosure. Alanna lives with me and Philip Ryan lives with her dad.
We were married for 18 years and held on to each other through the terror and fright (and the celebrations too). I see Philip Ryan every day. I get him ready for school with a personal care attendant’s help. He is a 109 pound boy who needs total assistance. Alanna and I go back and forth from each home everyday. We live 3 miles away.
This is our situation after so many medical procedures, exams, therapies, surgeries, flights around the country. Our goal then and now is to continue to give Philip Ryan the advantage of the best possible procedures and care so he can live life to his fullest potential.
Philip Ryan has Muscle Eye Brain disease or MEB. It is fatal. There is no cure. If Philip Ryan’s story can help a child or family in the future, then it is worth telling.
Philip Ryan taught me to pray before every meal when he was 2½ . People with MEB usually can say several one-word phrases. He says one-word phrases, signs and puts a couple sentences together, never forgetting to say “please” and “thank you”. His first words were “pray”, “mama”, “papa”, “church”, “Addie” (his sister) and “g,g” for Jesus. On Sundays, he would go to the door and say “church”. When he was in the van driving with me he would not let up; he would call out “church” and “g,g” until I took him there. He tucks his hands under his checks every night as he prepares to sleep.
I had so many dreams and goals for Philip Ryan. He wanted to walk. He was a floppy baby. He did not sit up until he was 3 years old. But, I learned every movement one needs to do to get him to sit up and walk. I believed in him and knew someday he would walk. Only one therapist said that he would walk, and I would like to thank Patty Hade for believing in us. He walked to my mother and me in the living room of the one-level home we bought that was just perfect for him. He has a special relationship with my mom; he calls her “Pita”. She understands everything.
Philip Ryan is cognitively delayed. There are things he just doesn’t understand, like that he doesn’t have a friend (thankfully). He doesn’t understand that his family became isolated from extended family and friends because either we could not keep up with the invitations, or we just stopped getting asked over.
He communicates throughout the day. He says “pray” throughout the day. He has suffered more than any human, especially a child, should.
Here is the medical version of our story: I had a normal pregnancy. I loved having him inside me. I wore beautiful maternity dresses and felt good most of the time. However, I did have an intense case of morning sickness for quite some time. Philip Ryan was born by a planned c-section because it was the second. He was born at 37 weeks. He had wet lung, and was given oxygen. He had a very rough night, with his glucose very low also.
Well, his dad noticed one of his eyes was not opening, and he also had jaundice. He was put under the bilirubin light, however the one we took home was not working. The doctors said, “Oh, don’t worry about his eye.” We did, of course.
Philip Ryan had larger than normal ventricles on his head CT scan. A neurosurgeon said it was life-threatening, and if we did not place a shunt in his brain he would die. So he had the surgery 3 weeks after he was born. It turned out to have been the wrong thing to do. We went through endless trials with a programmable shunt. When he was 4½ , the shunt was removed by the Mayo Clinic in Rochester, MN. After the shunt was removed, he began to walk – at age five years old!
Philip Ryan was born with a retinal detachment in his left eye. Later on, it reattached on its own. He had glaucoma in his right eye. He has had a total of 13 eye surgeries, ear tubes, tonsillectomy-adenoidectomy, appendectomy, and of course the shunt surgeries. He once saw 4 feet away, and we were grateful for that. His good eye died last summer. We prayed for a good death for his eye, and got one. He can now see about 4 inches with his right eye. How well he can see – we can only guess.
Philip Ryan is blind. He is very cognitively delayed. He is getting weaker. He used to be able to walk unassisted at times, but now needs so much more help. He was almost potty trained, and he likes to go to the bathroom, but can’t always coordinate it. He gets mad and sad when he goes in his pants. He is now in a stroller more often. He has moved from being partially mainstreamed to being in special education classes all the time.
We did not expect seizures, and last December, he had a 3 week non stop seizure. So we could only helplessly hold him and try to keep him safe and not scared.
He is like having an 18-month-old, a 3-year-old, a 10-year-old, and a Saint.
Philip Ryan is a musician. He can hold a beat way better than I can. On a bad day of mine, he will hum “Born Free” to me. His feet hurt everyday, like pricks all the time, so we rub them and he hums “Amazing Grace”.
My little boy has carried a huge cross. We are cherishing each moment of peace, contentment, and sweetness that is available. My heart is pierced as a mother, watching my little boy’s vision die and the non-stop seizures. I now pray for when the time comes to take him to heaven – he will not be scared.
Muscle Eye Brain disease is horrible. If Philip Ryan can help in any way, so there is never a child who is afflicted with this again, then I’m sure he would think this has all been worth it.
God Bless all of you and your children who are so beautiful and cope with muscular dystrophy every day.