Campaign for Levi Hoot
Donation protected
Levi was just born in October. Here is an update on his condition from his mom Leah:
Levi was diagnosed on Friday, February3rd with type 1 Spinal Muscular Atrophy. He has a poor prognosis (life expectancy is a year) without treatment which we are madly pursuing right now. The treatment (Spinraza) was released by the FDA only 6 weeks ago and it's the only treatment currently for SMA. The only hospital performing it currently in Texas is in Dallas so we are trying to get him up there ASAP to start as time is of the essence with this disease.
As you can imagine, we are devastated and heartbroken to find out our little boy has this rare disease. We have hope that God can use this challenge in our lives to glorify Him in some way. Thank you for your continued prayers and please pray for Levi's healing through treatment. The long term outcome of this medication is unknown since it is so new--Levi would be the first patient ever treated at Memorial Hermann if they are able to get the medication here in Houston (it's very hard to get) .
Leah, Nathan and Levi are traveling up to Dallas today through Friday or Saturday to visit the hospital that is doing the new FDA approved treatment.
Let's show our support for our dearest Leah, Nathan, and Levi through this journey. Any donation is welcome.
God bless and thank you.
Levi was diagnosed on Friday, February3rd with type 1 Spinal Muscular Atrophy. He has a poor prognosis (life expectancy is a year) without treatment which we are madly pursuing right now. The treatment (Spinraza) was released by the FDA only 6 weeks ago and it's the only treatment currently for SMA. The only hospital performing it currently in Texas is in Dallas so we are trying to get him up there ASAP to start as time is of the essence with this disease.
As you can imagine, we are devastated and heartbroken to find out our little boy has this rare disease. We have hope that God can use this challenge in our lives to glorify Him in some way. Thank you for your continued prayers and please pray for Levi's healing through treatment. The long term outcome of this medication is unknown since it is so new--Levi would be the first patient ever treated at Memorial Hermann if they are able to get the medication here in Houston (it's very hard to get) .
Leah, Nathan and Levi are traveling up to Dallas today through Friday or Saturday to visit the hospital that is doing the new FDA approved treatment.
Let's show our support for our dearest Leah, Nathan, and Levi through this journey. Any donation is welcome.
God bless and thank you.
Organizer and beneficiary
Maggie Lentz
Organizer
Manvel, TX
Leah Hoot
Beneficiary
