The purpose of this campaign is to raise money and awareness for my three year old niece Tessa, who is gradually loosing her eyesight, to make visual memories.
Tessa was diagnosed with Bardet-Biedl Syndrome (BBS) in November 2013 at age 1. BBS is a very rare syndrome that affects1 in 160,000. BBS affects many parts of her body including her vision. She will become legally blind by adolescence and may completely lose her sight by adulthood.
Tessa losing her eye sight gradually is heartbreaking, but it also gives her a chance to see as much as she can before that happens and for that we are thankful. We want her to be able to see the world before she no longer can. Please help us create some visual memories for Tessa before her eyesight is gone.
While we would absolutely love to fulfill Tessa's whole sightseeing bucketlist, we have chosen her untilmate dream which is to see Disneyworld and the ocean. We want her to remember what the ocean looks like when she feels the sand between her toes and smells the salty air.
Tessa is preparing for the loss of her sight by learning braille and how to walk with a cane, let's pitch in and bless her with the extra preparation of sight memories!!
Some additional info on Tessa's battle with BBS: With BBS abnormal weight gain is a factor. Tessa has a high risk of developing diabetes, high blood pressure, and high cholesterol as well as walking issues due to extra weight; Tessa currently wears braces in her shoes to help her with balance and pain. Tessa gets yearly EKG and Echocardiograms to check for the fatal heart defects associated with BBS. When Tessa was born she had extra digits on each hand and foot which her parents choose to have surgically removed at a young age for some normalcy. Her syndrome also affects her kidneys. Tessa’s kidneys are too small, which indicates she may need dialysis and eventually a transplant. She has already been diagnosed (last year) with diabetes insipidus: her body cannot regulate her water intake and she needs more water than the average person. BBS can also cause behavioral issues including immaturity and inappropriate outbursts. Tessa sees a handful of therapists to help her with speech and motor delays.
This sweet, kind, and loving little girl deserves this and I will not rest until it happens for her. Thank you for hearing her story and for any help you may be able to give whether it's a donation, prayer, share!
Tessa was diagnosed with Bardet-Biedl Syndrome (BBS) in November 2013 at age 1. BBS is a very rare syndrome that affects1 in 160,000. BBS affects many parts of her body including her vision. She will become legally blind by adolescence and may completely lose her sight by adulthood.
Tessa losing her eye sight gradually is heartbreaking, but it also gives her a chance to see as much as she can before that happens and for that we are thankful. We want her to be able to see the world before she no longer can. Please help us create some visual memories for Tessa before her eyesight is gone.
While we would absolutely love to fulfill Tessa's whole sightseeing bucketlist, we have chosen her untilmate dream which is to see Disneyworld and the ocean. We want her to remember what the ocean looks like when she feels the sand between her toes and smells the salty air.
Tessa is preparing for the loss of her sight by learning braille and how to walk with a cane, let's pitch in and bless her with the extra preparation of sight memories!!
Some additional info on Tessa's battle with BBS: With BBS abnormal weight gain is a factor. Tessa has a high risk of developing diabetes, high blood pressure, and high cholesterol as well as walking issues due to extra weight; Tessa currently wears braces in her shoes to help her with balance and pain. Tessa gets yearly EKG and Echocardiograms to check for the fatal heart defects associated with BBS. When Tessa was born she had extra digits on each hand and foot which her parents choose to have surgically removed at a young age for some normalcy. Her syndrome also affects her kidneys. Tessa’s kidneys are too small, which indicates she may need dialysis and eventually a transplant. She has already been diagnosed (last year) with diabetes insipidus: her body cannot regulate her water intake and she needs more water than the average person. BBS can also cause behavioral issues including immaturity and inappropriate outbursts. Tessa sees a handful of therapists to help her with speech and motor delays.
This sweet, kind, and loving little girl deserves this and I will not rest until it happens for her. Thank you for hearing her story and for any help you may be able to give whether it's a donation, prayer, share!
Organizer and beneficiary
Ashley Grittner
Organizer
Osseo, MN
Veronica Arvidson
Beneficiary