Lila Barber

Let me start at the beginning, for those of you who are not familiar…my name is Maria and my husband is Matt. On May 16, 2006 we gave birth to our first little girl, Lila, and she was so perfect! Even though we saw perfection, we had lots of trouble with her diet, acid reflux, lots of crying, and lack of forward progress towards milestones within her first year. ! At 10 months we realized that Lila was not growing, she was only 13 lbs. 2 oz., coming to the conclusion that she has celiac disease and had not been getting the right nutrition. So, upon change of diet, she grew 1 lb. a month for 10 months straight! Very exciting for us, nevertheless she had not gotten stronger or met any more of her milestones that we had already passed. ! At the age of 12 months, we ran every test you can think of (MRI’s, EEg’s, nerve conduction tests, syndrome blood work, etc.), all tests came back normal, our neurologist could not figure her out. When she was 2 1/2 he diagnosed her with hypotonic (low muscle tone) cerebral palsy (following that diagnosis with, “for lack of any other name”). This was based on the fact that she could not walk unassisted, her cognitive level was a bit behind the average for her age, and she only had a handful of words. ! Matt and I had a hard time grasping onto that diagnosis because it was so vague, and there was very little evidence of CP. So, we went to Stanford for chromosome micro-array testing, University of Chicago working with developmental specialists, and Shriners in Sacramento. None of these specialists gained us much ground, unfortunately. ! In the midst of our research, we found that we were pregnant with our second child. In finding the light through all of the stress, we began to learn as much as possible about cord blood banking, and realized that the stem cells could help Lila in the future. So, after Nora was born, we banked her cord blood and began talking to doctors all over the world about stem cell treatments, learning all we could about stem cells, and talking to parents all over the world who have already had treatments. We went back to the neurologist when we made the final decision that we were going to offer this treatment to Lila, and he went back to review her previous MRI’s only to find that her cerebellum is smaller than normal. Her diagnosis is, in fact, hypotonic cerebral palsy. Long story short, Lila had a stem cell treatment in August of 2011. Changed her life forever! Her success with the first treatment had led us to have another in January 2015. The changes were mild in presentation, but still an overall success. ! Since 2011, we have also learned about these intensive physical therapy programs that benefit her TREMENDOUSLY! We try to attend two 3-4 week sessions a year. They typically are held for four weeks, 5 hours a day, 5 days a week. The first session she attended, 5 weeks after her stem cell treatment, Lila walked in with a walker and out with forearm crutches…in four weeks! She is amazingly motivated, driven, and happy. Her determination continues to surprise us, as she makes leaps in bounds in her own time. Two years ago we moved to Florida for 5 months to do intensive PT with a therapist from Poland who is based in the Orlando area. Lila is fully capable of walking independently at this point, thanks to intensive PT, however it is a slow process that requires much patience. These therapies are not covered by insurance, which is the reason for the dodgeball tournament. With every tournament that passes, Lila is able to continue her progress with therapies once or twice a year. We could not do it without the support of our friends, family, and community! ! Check out these videos of her past skills and current skills. All of this progress is because of intensive physical therapy in Florida! Thank you all for your continued love and support! !

Visit www.mommyyouknowwhat.blogspot.com to see what an impact your fundraising dollars have made in Lila’s life! (THANK YOU!!!!)

Lillian Darnell

Seventeen-year-old Lillian Darnell was diagnosed at 3 years old with a rare chromosome deletion which only affects 1 in 56,000 called 18p-. She was delayed in many developmental milestones. Speech therapy, physical therapy, and occupational therapy were a constant in her early years and throughout middle school.

The main way that 18p- continues to manifest and cause difficulties is with speech difficulties, anxiety, chronic pain, deep fears, inability to process strong emotions, and executive skills.

We are fortunate a group exists specifically for people like Lillian and families like us. That group is the Chromosome 18 Registry & Research Society.

There is the Registry arm which is comprised of the families as members and a Research arm in which they study the deletions, duplications, and rings of chromosome 18. They are based out of the University of Texas in San Antonio.

Every summer The Chromosome 18 Registry & Research Society hosts a family conference to bring families together, provide us with the latest research, and facilitate sessions regarding therapies, transition, and financial planning.

Although we learn about the latest in therapies, simply attending the conference is one long therapy session for Lillian. It is incredibly inspiring for her and she has commented recently that when she is there, her stress lifts. Knowing that she will attend, she sets goals of fears to conquer either before the conference or during the conference.

Lillian’s only friends are her peers she has met through the Registry. She texts and messages with them all year and this is the one time a year they all get to see each other in person. They get each other, like no other could. I call that “friend therapy”!

If interested, here’s where you can go to learn more about Lillian and her family:

Lillian is a first time author and has a blog and website at http://www.LillianDarnell.com