The most frightening moment was June 7th, 2013. Liam didn't sleep really at all the night before and he went to bed fine around 9pm but then at 130 he woke up screaming and rubbing his legs. He stopped when I cradled him, but the moment I put him down he would scream. this went on until 830 when he finally let me put him down. Liam then went on to sleep until 3pm ate lunch and went back to bed. He didn't walk/crawl or even attempt to do anything but sit in the chair I put him in and have me hold him. The doctor says that some days are just bad ones. He didn't even want to see him!

Most exciting moment was the first time he said momma. I was blessed to hear him say it countless times for 3 whole months; before he became non-verbal for no known medical reason.

Did you know that MPS is detected by a simple blood or urine test. But it is currently not a test regularly done in pediatric doctor offices. Please at your next doctors appointment ask them to test. Especially if your child has autistic tendencies, developmental delay or is regressing.

There is no cure but through awareness there is hope! 


Liam may have a lot going on but at the end of the day he is just a toddler, who wants to play with his cars, balls & watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play. 

Almost everyday prior to transplant was terrifying because she was doing so poorly, we didn't think she would make it to transplant. And every time we handed her over to the thoracic surgeon was terrifying, not knowing if we would get our baby back. The most exciting was first seeing her PINK after her transplant. Even with all the tubes, lines and wires, you could see her bright pink lips from the doorway to her room. Also, Christmas 2012 was her first Christmas home and it was wonderful to finally have a holiday with our whole family.

The most frightening experience was when Roman started to crash on day 3 of his life. The doctor came in and told us that he had to talk about our boy, and that he was very sick. I had five minutes to see him before they rushed him to Nationwide Children's Hospital. He was blue from head to toe. We had several scary moments, including several coding episodes. However, the happiest day was when we got the phone call that they had found Roman a perfect heart. We will always be grateful for Romans donor family that gave Roman a second chance at life. Bringing Roman home after being inpatient for 7 months was so overwhelming! By far the best day of our lives!!

Callista and I underwent fetal surgery to repair her spina bifida when she was 22 weeks gestation at Vanderbilt Children's Hospital.

At 2 days old, she a shunt placed for hydrocephalus.

At two months old she had a decompression surgery.

At four months old she had a g-tube placed.

At eight months old she had a double hernia repair and a vesicostomy.

She currently has physical and occupational therapy 1-2 times a week.

The most frightening thing was the initial fetal surgery as we had to deal with the fact that we could lose her by trying to help her. She could have been born extremely early because of the surgery as well.

We also had a pretty frightening beginning. 12 days after we were allowed to bring her home, she started acting very funny. We took her to the ER and thank goodness we did. As soon as we got there, she stopped breathing and turned blue. They rescued her quickly but we ended up with another 2 month stay in the hospital where they did her decompression.

The most exciting part of our lives is just simply seeing her grow. Although she is far behind on her developmental milestones, every time she reaches one is a celebration. She is beginning to support her own head and has said her first word (Da-Da!).

The most frightening moment so far has been when we first returned to the hospital in Roanoke and we believe the ride stressed him out and he fought for his life for about 24 hours. Once he adjusted, he was ok. The most exciting moments have been watching Jayden do things that doctors said he would not do, like breathe on his own without the vent, learning to be mobile and scoot around and also learning to talk over his trach. I was told that because he was trached and on a vent, we would not able to hear him talk or cry. HE does all that and more!

Multiple MRI's & CT Scans. He had a Port put in. 33 days of Radiation along w/ 42 days of Chemotherapy. Now battling his 10 rounds of chemo (he has had 4 of 10 rounds already.) He has his CBC checked every week (which means his port accessed every week.) He also lost his hair during Radiation treatment. Also switching medications around to stop his seizures he was having (which stopped once he started Radiation). He also does Occupational Therapy for his left hand (which he lost the strength in during his long seizure he had at the very beginning).