Save Lydia

A parent's worse nightmare is losing their child. Our daughter Lydia is 1 year old. She will turn 2 in October. She is so full of life. She loves playing right along side with her big sister. But her little body is dying. Before her disease takes over her body and brain damage starts to occur, we have one chance to change her fate & it has to happen soon. What if money was the one thing that stands in the way of your child's chance to live? We need your help to save our sweet Lydia. **donations are tax deductible**

Our Story

When Lydia was born, we were so excited. Her big sister was so happy to have a forever best friend. Our hearts were so full. She had a perfect birth. The doctor said “she’s perfect”. We were so in love with her. We were so happy to have our new girl to take home with us. 18 months of our lives were just full of happiness. Until April 4, 2024, the day our lives changed forever.

Our sweet Lydia was diagnosed with a rare genetic disorder called Sanfilippo Syndrome type B, which is terminal. Life Expectancy not passed teenage years. Our hearts were shattered and it was a dark place I cannot even explain. How was our child slowly dying and we did not even know it?

In March, my mother sent me a TikTok of a little girl named Olivia with the TikTok account "Saving Liv". This little girl could have been my Lydia's twin. It was a gut punch when I saw the diagnosis of Olivia being a terminal illness. Of a disease I did not even know existed. So I started researching more of the disease, with symptoms that went along with it. I found frequent ear infections, sleep disturbances, distended belly, GI issues, and prominent thick eyebrows, which were all the symptoms Lydia had. The thick eyebrows were something I thought she inherited from my husband. Everyone always said "They look just alike". I knew then when I saw the symptoms, this was what my daughter had. My gut told me so but my heart told me there was absolutely no way (it is 1 in 70,000) that my baby who has met all milestones in her life and to me, was a healthy baby as I thought.

I took my concerns to our pediatrician in our hometown of Natchitoches, Louisiana. I showed him side by side pictures & the TikTok I had seen. He told me "I have never been asked this before, nor have I ever seen a child with it". He told me he would have to go do research himself and come back into the room. He came back into the room and tells me "I cannot come back in here & tell you she does not have it, so I will order you the genetic testing for it, but you will have to do it at another hospital because our town does not have that type of ability to test for it. I want you to assure you that this is very rare, and children come in all the time with issues not sleeping, constipation, and frequent ear infections still after tubes". I was so grateful that he listened to me, ordered us the testing, and did not make me feel crazy. We went to another hospital to have the testing done the very next day. It was a blood test and a urine test.

A week of anxiously waiting to "rule it out".... the following Thursday I pull up my patient portal to see POSITIVE MPS III (Sanfilippo Syndrome). That exact moment was the worst feeling of any day I have ever had on this earth. My heart sunk, I felt like I could not breathe. The instant feeling of "my baby is going to die".

This dark place my husband and I were in last for about 2 weeks. It was then, I was ready to fight for her. I contacted the Cure Sanfilippo Foundation to figure out what I could do as a mother to fight for her and the treatments available for her. There are no current treatments or cure approved by the FDA, only clinical trials. But there is HOPE. These clinical trials have a gene therapy treatment and an enzyme replacement therapy. In Sanfilippo Syndrome, Lydia's body is missing an enzyme that is used to breakdown sugar molecules. Without this enzyme, toxic waste build up in her body. This would explain her distended belly from an enlarged liver. That I thought was just from constipation. As the years go by and more toxic waste build up, it will start affecting her brain, causing damage, leading to her to lose or forget all of her abilities such as walking, talking, and feeding herself, everything she has already learned. This is why it is called Childhood Dementia. She will also eventually endure pain and suffering, and then die. This is 100% fatal. WE NEED A CLINICAL TRIAL. Before this starts to damage her brain.

Luckily, we were able to get diagnosed early because of TikTok and our pediatrician. The regression usually starts around age 3 and 4. But every child with this disease is different. This would mean we have a year or two before her brain will become damage. The only way clinical trials happen, is funding for research. They are happening now. There are trials happening for Type B, but there are currently no openings for our Lydia. With that, we need an opportunity for another clinical trial to become available for her. This is how you can help us Save Our Lydia. So one day, when my 4 year old daughter, Heidi, is able to understand, I will not have to explain to her that her little sister is going to die. The words I never want to hear is "I don't want my sister to die". After the diagnosis, that is the moment I am dreading. She is the best big sister to her. Her sister deserves a chance at life.

As a mother, feeling helpless and knowing this disease is out of my control.. the only thing I know to do is fight for her. Fighting for her in this case is making awareness of this disease, sharing her story, fundraising, and in hopes her story will reach the world. Hoping the world will help save her. We pray everyday for this. We will never stop fighting for her. Every dollar counts. We need a miracle and this world of a community could be our miracle. Along with all the other children and families suffering with this disease and heartbreak.

Our goal is to raise $1 million dollars to help fund a clinical trial and give our Lydia a chance at growing up, a chance at life. We can't just sit back and accept that she is going to die with knowing there are treatments out there. Previous clinical trials done for Sanfilippo Syndrome have shown real promise. We just need to fund more trial opportunities like this for children. Our Lydia needs treatment!! This campaign for her LIFE is as urgent as it gets. It's now or never for Lydia.

There is no guarantee Lydia will be among the children accepted into the trial, but with the funds and early diagnosis, there is a larger chance. But we have hope. This is truly our only hope. Her story has already reached millions. People Magazine, VT, Daily News, & News stations. Help us keep sharing her story. In hopes it will reach a celebrity or millionaire that will be these children's spokesperson and help fund for them. They deserve a chance at this life. A parent's love is like no other. If you are a parent, you understand.

There are three things we are asking you to do. A campaign like this can grow quickly if supported and if shared with great mass. We can reach this goal if it goes viral.

1. Please donate what you are able. All donations go to the 501c3 nonprofit Cure Sanfilippo Foundation (Tax ID: 46-4322131) to fund a clinical trial and are tax deductible.

2. Please take a few minutes and share our GoFundMe everywhere you can. It’s really easy to do. Just click the “Share” button and send it everywhere you can. Please help this reach the right people. I know if they see it, this can happen.

3. Please leverage any avenue you have to make this go viral.

Thank you for making it this far in our story. I hope you are able to help save our girl.

-Morgan & Kirk

Other ways to donate:

-- By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. Include “Save Lydia” in the memo.

-- Donate via Venmo, ACH, digital wallet or digital wallet, go to https://give.curesanfilippofoundation.org/save_lydia

-- Make a recurring donation, go to https://give.curesanfilippofoundation.org/give/630751/#!/donation/checkout?recurring=1

-- By stock gift, email [email redacted] for details.

Follow us

-- TikTok: https://www.tiktok.com/@hopeforlydia

-- Instagram: https://www.instagram.com/hopeforlydia/

-- Facebook: https://www.facebook.com/profile.php?id=61561244030850

For media

For additional information and photography for the media, please go to http://CureSanfilippoFoundation.org/Save_Lydia

Credits

Special thanks to Joe Lane of Anointed Media LLC (https://www.anointed.media) for lending his tremendous videography, video edit, music and audio editing skills, and passion to this project.