It’s hard to believe we are wrapping up another month. May marks the end of another school year for my boys. It’s such a bittersweet feeling. We are excited for summer trips and no alarm clocks, but saying, “see you later” to friends is difficult. It is especially difficult for Ben. He loves school and all his friends, aids and teachers.
Although, he will definitely enjoy his lazier days at home too.
June is going to be an exciting month, with a trip planned to the Chicago area for all 6 of us to attend the United Leukodystrophy Foundation’s Family Conference. Dr. Fraser and her team will be presenting their research work that you have funded. I cannot wait to share with you all they have accomplished.
With LOVE + HOPE,
Ashley
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Patient Tribute
Evelyn (Evie) Parkhouse-Denham was a happy, extremely sociable and friendly girl, who loved life. She was a participant, not a spectator. She enjoyed swimming and being with her sister and friends. LCC/Labrune Syndrome caused a gradual deterioration of her health and sadly, in June 2020, she passed away at just 12 years old.