Children's Program

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The children’s program began on Friday with a visit to the St. Louis Zoo. We sent out 75 children/siblings and their carers for a day filled of fun and laughter. The buses were loaded at 8.30am for a 15-minute drive to the zoo, where everyone was broken down into smaller groups to begin exploring the Zoo


After their day of fund and visiting the animals, train rides and a very hot day very tired and happy children and their carers returned to the hotel at 4.30pm. Each child came home with a soft toy a memento of their visit to the best Zoo in the world.

Day two of the children's program was broken down into three different parts. Children under 15 years of age stayed in the childcare room and were entertained by an Art Therapist and Story telling They also had a visit from Elsa from Frozen and Captain America from the Avengers. What excitement there was when the entertainers were seen coming down the hallway. The smiles and shouts of glee were truly heart melting.

For the older girls 15 years and above there was a pampering session where they got their nails painted and had their hair done ready for the Gala Dinner that evening.  We think some of the younger girls also snuck in and got their nails painted.  A posh morning tea was donated by the London Tea Shop.


The older boys 15 years and over went on a tour of the Ballpark museum


That evening we hosted our Gala Dinner, where we thanked all our wonderful speakers and presented our Life Time achievement awards, to those who have spent their entire life working in the field of research and advocacy, for Lysosomal Storage Disorders. And -   to make sure the children were not left out they had their very own carnival night, where we had face painters, balloon twisters and so much more.  Again, the excitement, smiles and laughter was a sight to be seen.

Sunday was a very slow day but the children were visited by Darth Vader and his friends.

The children had the time of their lives and we hope they will have lasting memories of their visit to St. Louis.

ISMRD is very grateful to the Pernillie Foundation who provided funding for the Children's program and scholarship funding for families who needed a little bit of additional assistance.