Support the Waugh Family
Donation protected
My precious niece Danni has had a rough start to life. On May 1st she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. SMA is a rare genetic disease that robs people of physical strength by affecting the motor nerve cells in their spinal cord, taking away their ability to walk, eat or breathe. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1) and is the #1 genetic cause of infant death. In 2019, the FDA approved a new treatment for SMA called Zolgensma. Zolgensma is designed to target the genetic root cause of SMA by replacing the function of the missing SMN1 gene. Thankfully, despite the 2.1 million dollar price tag, Danni received this treatment on June 4th.
It is been over a month since Danni's treatment. Jim and Emily have seen movements that Danni was definitely not able to do prior, especially in her arms. She is now able to raise her arms up some from her shoulders, her hand grip is much stronger, and they have seen some small movements from her knees and hips, very very small, but it’s more than she had before, and with SMA, even tiny improvements mean A LOT! The hope is that she will eventually gain enough strength to hold her head up consistently, sit up, and hopefully bear weight on her legs.
Unfortunately, babies with SMA can suffer major consequences from simple germs. Danni caught a simple cold which sent her to the hospital with severe respiratory distress. She has remained there in the ICU for the past 6 days, without any indication of when she will go home. This is the third hospitalization for sweet Danni in her short 9 months of life.
My hope is to ease the financial stress placed on Jim and Emily as they navigate getting their baby girl the best possible treatment, while they are also working hard to give big brother Alister the attention he needs. Not only will medical bills pile up, but there is assistive technology and equipment that can help optimize Danni's care. I would love for Jim and Emily to be able to purchase the equipment they need without having the worry of the financial cost.
Every little bit helps. Please keep Jim, Emily, Danni and Alister in your prayers.
It is been over a month since Danni's treatment. Jim and Emily have seen movements that Danni was definitely not able to do prior, especially in her arms. She is now able to raise her arms up some from her shoulders, her hand grip is much stronger, and they have seen some small movements from her knees and hips, very very small, but it’s more than she had before, and with SMA, even tiny improvements mean A LOT! The hope is that she will eventually gain enough strength to hold her head up consistently, sit up, and hopefully bear weight on her legs.
Unfortunately, babies with SMA can suffer major consequences from simple germs. Danni caught a simple cold which sent her to the hospital with severe respiratory distress. She has remained there in the ICU for the past 6 days, without any indication of when she will go home. This is the third hospitalization for sweet Danni in her short 9 months of life.
My hope is to ease the financial stress placed on Jim and Emily as they navigate getting their baby girl the best possible treatment, while they are also working hard to give big brother Alister the attention he needs. Not only will medical bills pile up, but there is assistive technology and equipment that can help optimize Danni's care. I would love for Jim and Emily to be able to purchase the equipment they need without having the worry of the financial cost.
Every little bit helps. Please keep Jim, Emily, Danni and Alister in your prayers.
Organizer and beneficiary
Katie Czerwinski
Organizer
Renton, WA
James Waugh
Beneficiary