We Need Your Help to Keep This Channel Going
(They help so many families; they taught so many people about disabilities that others did not know about. They had raised money for families.)
Don't let YouTube destroy such wonderful people doing good, because YouTube would much rather push AI content down our throats.
The videos that touch me—warning: you will cry, even when parts that make you laugh, you will still cry.
A Dying Daughter’s Final Days with Her Single Father
Lynnon has a rare genetic condition caused by a mutation in her CRELD1 gene, a disorder with a typical life expectancy of just 2 years. Lynnon is already 2 and a half, enduring constant pain and frequent hospital stays. Her devoted single father, Dillon, has made the heart-wrenching decision to sign a Do Not Resuscitate (DNR) order for his daughter. While he isn't ready to say goodbye, Dillon shares that he wants Lynnon to have peace and rest when the time comes.
Brain Injured by a Kiss (The Danger of Kissing a Baby)
Breelynn was born a healthy baby but was kissed by a person with a cold sore as an infant. Since her immune system was not developed, this infection attacked her brain and left her with a severe traumatic brain injury. Now 8 years old, Breelynn is unable to walk or talk and is not expected to live into adulthood. Breelynn's family wants others to know that there is real danger in kissing a baby, especially on the mouth.
A Child with Shaken Baby Syndrome (Assaulted as an Infant)
Bryce acquired severe shaken baby syndrome when he was violently shaken at three weeks old. He now has many disabilities stemming from this incident. Bryce is now learning how to live with a severe traumatic brain injury with the help of his living adoptive family.
Siblings with Childhood Alzheimer's (Roman and Stella)
Roman was diagnosed with childhood Alzheimer's (ASMD) a few days after his parents learned they were pregnant with Stella. This diagnosis came with the heavy knowledge that Stella had a 25% chance of inheriting the same life-altering condition. Stella was later diagnosed with this fatal disease. As both siblings face a devastating regression, their parents are focused on living in the moment and providing Roman and Stella with joyful memories while they all battle this rare disease together. Learn more about Roman and Stella and how to help at https://www.saveromanandstella.com/
A Child Left to Die Because the Cure Wasn’t Profitable (And How You Can Help)
Max was born with TBCD, a rare genetic condition that leaves children with a life expectancy of about 5 years old. His family was told a cure was not possible because it is not profitable for pharmaceutical companies to cure a rare disability. Helena, Max’s mom, started asking for donations online to fund research that could potentially save Max’s life. This research has started and is looking hopeful, but the situation has left Max’s family wondering how the USA government can spend trillions of dollars on war while leaving disabled children to die when a cure is possible. Contribute to a cure for TBCD at give.nationwidechildrens.org/TBCD_Bradbury To donate directly to Max: www.MiracleForMax.com To learn about TBCD: www.TBCDFoundation.org
The Story of Piper (The Only Known Case with her Rare Genetics)
Piper is a nonspeaking child with two rare genetic conditions. She has learned to communicate by humming songs that are relevant to her mood. For example, when Piper is joyful she hums, "If You're Happy and You Know It". Piper's family wants others to know that her form of communication is valid.
A Teenager with Dementia and his Loving Family
Michael is diagnosed with a form of childhood dementia known as Hunter syndrome. He is progressively losing the ability to communicate as his health declines. His family is working to find new ways to connect with him, like through singing and dancing. Michael has already surpassed the life expectancy for Hunter syndrome, so he and his family are focused on enjoying every day they get together.
A Child with Dementia and her Loving Sister
Help cure Sanfilippo syndrome at https://CureSFF.org/SpecialBooks Belle is diagnosed with a form of childhood dementia known as Sanfilippo syndrome. As a result her life expectancy is in the teens and she is slowly losing cognitive and physical abilities. Belle's sister, Arden, was confused why they could no longer play together on the playground. But now that she understands the reality of Sanfilippo syndrome, Arden just hopes Belle knows that she is "loved more than sugar pie".
Living with Childhood Dementia (Sanfilippo Syndrome)
Sadie is diagnosed with a form of childhood dementia known as Sanfilippo syndrome. This rare genetic disorder slowly takes away a child’s ability to walk, talk, and eat. Those with Sanfilippo syndrome have a life expectancy of around 15, so Sadie’s family has decided to surround her with unconditional love and create as many positive memories as possible.
Living with a Smooth Brain (Lissencephaly)
Maddie was born with a smooth brain, unlike most brains that have ridges. This condition, known as lissencephaly, impacts every area of her life. Maddie can experience over 100 seizures a day, but she is still able to find joy by playing with her dolls and connecting with family and friends.
A Kid Denied Life Saving Treatment (Because He's "Incompatible with Life")
Keneas was denied life-saving heart surgery when he was born because he was declared "incompatible with life". Doctors suggested his parents take him home to let him dehydrate and pass away. They refused to accept this outcome. Keneas was 3 years old when this surgery was finally approved out of state. He is now 6 years old and loves to play ball, but has many medical complications caused by the delay of his heart surgery.
