I have never blogged before, I am usually extra private, but this is greater than me. On Saturday, my son was diagnosed with Niemann-Pick Disease. An ultra-rare disease that Justin and I had never heard of. We frantically wanted answers, and started searching the internet. What a roller coaster. There is a ton of information out there on a disease that only about 500 people on this Earth have.
I don’t know how many times I read the words “There is no cure“. What an awful disease. My poor baby.
Justin and I were devastated. We did everything right, how could this happen to us? After a meeting with the genetics doctor, Justin and I learned that we were both recessive carriers of a mutated NPC gene. We both have rather large extended families, and this has never presented in either family.
What next? How do we get the best care available for our son? What is out there? While searching for answers, I went to of all places Instagram, and searched the hashtag #niemannpick, I found a similar story to mine, and I contacted the wonderful mommy. She too has a blog. (https://jaxcescobeda.home.blog/) Surprise, she inspired me to share my story. I reached out to Lacey, and she told me that she just finished a clinical trial for a trial drug VST-270. We talked and cried for about an hour. She was so wonderful, sharing her story, and her research. Finally a glimmer of hope.
Lacey shared the contact information with us to the coordinator of the trial program. We called her on a Sunday and to our surprise she answered and immediately went to work. We decided to try to get some sleep (yeah right).
This morning came quickly. We were discharged. Finally we are going home. Before we left the hospital, we got a phone call. The coordinator from the trial called to let us know that they accepted Noah, and they wanted to start right away. What does this mean? A 7 week journey in Saint Louis, Missouri. What is in store? We don’t really know. But this is the best shot at helping Noah, so we are onboard. Our tickets are booked, and we will be on our way Thursday Morning.
I Love you both 💙 May you inspire and help others with your story my little man. God bless you, mommy and daddy 🙏🏼
My heart as a mother is with You and your family. I will keep your family in prayer. I will pray that God give you the strength to see you through this storm.
Father, I need peace in my mind and soul. Help me to follow you each day. Transform my worries and troubles into trust, joy, and peace. Amen.
Praying for you all.
I will be praying for you and your family. Thank you for sharing your story to be an inspiration to so many others. Sending so much love + peace + sunshine to you all.
God Bless your baby Larissa 💙 he works miracles
Lari my heart is broken for yours I can’t even imagine what you are going through. My prayers are with you and baby Noah. May God give you strength and peace as you take this journey. I love you all so much and I am here for anyting you need.
God is all powerful and I will pray non stop for healing, strength and peace.
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
Philippians 4:6-7
I am praying for Noah, he is such a sweet baby , loved taking care of him. May he respond to this experimental therapy. Justin and Larrisa I am praying that God give you strength and faith through this tough journey 🙏🏼
Justin and Larissa, stay STRONG. Many blessings and prayers for baby Noah…🙏 NEVER lose your faith….. For we walk by FAITH not by sight.
Love you Guys….❤🙏🙏
Justin and Larissa stay strong and hang in there. Because Noah will hang in there with his wonderful parents. Our prayer will be with you and the family, specially for Noah. There are mira lesson in prayers and God will be there every step of the way. May God Bless you both and specially Noah. Love you Maite. ❤️