Great News for the Lysosomal Disease World!

When Jenny saw Dr. Stella Davies today, she shared some wonderful news with us. In September Stella will be heading up the Bone Marrow Transplant Ward at Cincinnati Children’s Hospital. She will be working closely with a geneticist that is very involved with lysosomal diseases.

She is very excited and happy. And so are we, now when we hear about children with alpha-mannosidosis or any other lysosomal disease, anywhere in the world, that are considering a bone marrow transplant, we have someone and someplace to send them. Jenny was disappointed about Stella’s move, but Stella assured her that she will always be only a phone call away. We are in a position now where we can feel comfortable without so much one-on-one with Stella. She was here to help us when we needed her. Now she will be available at a higher level for all of the wonderful children in the world that have these awful rare genetic diseases.

Jenny’s labs and counts today: 182K Platelets (normal is 150K-450K), Hemoglobin 11.7 (normal 11 – 13.5), Red Blood Cells 3.38 (normal is 3.8 – 5.2 Oops… we have a little ways to go on this one), and white blood cells 6.0 (4.0 – 11.0). Wow! We are VERY HAPPY. Jenny is not on any medications. Her blood pressure was a little high today (142/113) so Stella has scheduled a kidney ultra-sound for tomorrow afternoon. We will hope for good results from that. In the past Jenny’s blood pressure has been quite low (more like 98/60), so this was an unexpected surprise. But we know that Stella will get to the bottom of it before she leaves Minnesota.

More good news is that Jenny has been traveling and enjoying a more
normal “26 year old life.” She is vibrant and happy and better than ever.
Our hopes are high for Jenny’s quality of life from here on out. We only
expect everything to continue to get better and better.

Your thoughts and prayers have kept us going this past 3 years. Thank you, thank you, thank you!

Love,
Steve, Dianne, Jenny and Jason