On December 2, 2019 we got a call from her genesis telling us that our 1 year old baby girl has a rare genetic disorder called Mucopolysaccharidosis (MPS1). They explained to us she is the only case they have had in Richmond, VA and the only case at the hospital as well and that they needed to do some research on what the next step would be. Without any treatment most MPS1 kids don’t survive past 5 years of age. Imagine our concern that our 1 year old is not only rare but that we have no idea what the next step is for her to survive past 5!
So we made an appointment with them to discuss more on Thursday December 5th. After we talked with them, they explained more about MPS1. MPS1 is a rare lysosomal disorder where her body lacks an enzyme called alpha-L-Iduronidase without this enzyme it cannot break down the sugar molecules (GAGS) in her body causing it to build up in her bones, organs, brain etc. The genesis said that bone marrow transplant have been very successful for MPS1 as well as ERT which is transfusions of the enzyme she is lacking but this does not help with the brain like transplant does and more of a temporary plan of action.
We decided that we wanted to move right into transplant and the closet place to us was Duke University Hospital in Durham, NC. So we talked to the doctor there and liked what he had to say. On December 28, 2019, we went to Durham, NC and started her post-transplant work up. On February 18th 2020 Laila had her central lines put in and was admitted to Duke to start chemotherapy for transplant. February 28th 2020 was our transplant day.
What an exciting day that was I will never forget the smell of cream corn/pizza sauce that seeped through her pores while the transfusion of her cord blood was going. Laila had so many ups and downs in our 107 days at the hospital from having every rare thing to happen during transplant happen to her. She developed HHV-6 and TMA which set her back a lot of being able to leave. She had been intubated for 8 days for aspiration pneumonia and then having fluid around her heart which needed to be drained.
After 8 days of intubation we continued to monitor her fluid on her heart which continued to build up more every couple of days she then had to have a paracardial window placed in the sack around the heart. On day 71 after a couple of days from her surgery they pulled her drainage tube out and within a couple of hours the rapid response team were called Lailas oxygen kept dropping and was intubated again for 6 more days.
Each one of this hiccups Laila continued to fight and finally, day 87, we were able to be discharged from Duke!! She was put back into the hospital shortly after due to vomiting and diarrhea which we diagnosed her with gut GVHD and we continue to be treating it even today!
It has been a very long road for our baby girl and she is still fighting hard everyday!