News : School shows their Stripes for one of their own

Tilford Elementary shows their stripes for Aimsley on Rare Disease Day

Like Leap Day, Rare Disease Day is recognized on the last day of February.

ZTTK, Zhu-Tokita-Takenouchi-Kim, Syndrome is a disease that Aimsley Van Ree was diagnosed with when she was only 3 1/2. Aimsley who is now 5, is also part of a duo with her twin brother Wesley. Aimsley is the only child in Iowa that her family knows of right now with the disease. Jason and Mindy also have two other children, Owen and Maddison.

It is estimated that there are 7,000 rare diseases and maybe as many as 8,000. Because of the rarity, funding for research is limited and little is known about these diseases. There is no idea how to treat most of the diseases or possible cures.

On Friday, the 5 year old shared with her classmates a goodie bag with zebra pictures to color, and information sheet about her condition and shared a special treat of fudge striped cookies. The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness.

The disease ZTTK was only discovered in 2016 so there is very little information available about it. So far only 2 studies have been done on the disease, and this leaves the family unsure of what to expect for Aimsley's future.

When Aimsley was first diagnosed, there had only been 26 children diagnosed in the whole world and now there have been 60 diagnosed. What they do know about the disease is that the children battle low blood sugar, poor weight gain and grown, a lower immune system and struggle with developmental delays. Aimsley has accomplished things that many of the children struggle with. Many cannot walk, talk and struggle with potty training. She's been fortunate to be higher functioning than a lot of the fellow ZTTK children. She's continuing to prove physicians wrong, said her mom Mindy, dodging a lot of the health problems that others have faced. "Our girl is meant to do great things and we can't wait to see what God has planned for her! She isn't going to let 4 little letters define her" said her mother Mindy.

When dealing with a rare disease and all of the unknowns, about all that physicians can do is try to treat the symptoms. Part of Aimsley's treatment has included, physical, occupational and speech therapy.

Mindy made an important observation as the family has taken this journey. She recognized that the teachers are sometimes thanked for what they do, but she felt like the special needs teachers and aids are an "extra kind of special!" She said of them, "They are constantly going above and beyond and we are so lucky to have such a good group in our elementary school.

We have a special needs Kindergartener and they have been amazing for her this year. She has grown leaps and bounds because of their expertise, guidance, patience, and love. Mrs. Murray (Lisa) has been exceptionally wonderful, has been a great advocate for Aimsley, and has just been an overall blessing for Aimsley and our family."

Mrs. Murray (along with another teacher) helped design and made shirts for Aimsley, and her family, and some other special needs teachers and staff. Mrs. Murray also arranged for Aimsley to be celebrated at school on Friday for Rare Disease Day, with the shirts worn by some of the staff.

On behalf of Aimsley and her family, we do want to say an extra special thank you for those teaching and helping with our children that need an extra hand.

Pictures of Aimsley with her class, note their stripes, and striped cookies to celebrate Aimsley.