Our New Normal [s] » Our little family's realization, that there is no normal

Update on all things RARE –

I am writing to ask you all to stand with us. For those of you that don’t know, our daughter Vivia has been battling a serious illness since she was 5 years old. It is an extremely rare, life-threatening disease that only effects 1 in one million children. She achieved remission a year ago (after 7 years of treatment) – but now it is trying to come back. Her body is showing signs that it has returned.
Her doctors, after examining her recently, wanted her to begin treatment again immediately, for at least three months.
These treatments are pure hell for her. And really hard on the whole family too. Physically, emotionally, financially, The hospital where she is treated is 2 hour drive from our home. My heart is broken for Vivia and all that is in front of her. And I really wish I could take her place so she wouldn’t have to go through this again.
Please just be with us as we face this again. And pray for the rapid healing of her body and protection of her heart. For those of you who have met her, you know she is full of life and joy and hope. Pray this will not be robbed from her as it was the first time she battled this.
Please pray for her mind – because this takes a toll on her self esteem and the drugs are very strong and can cause horrible side effects of rage, psychosis and severe headaches. (I am not claiming this, but just telling you what happened last time).
Gabe and I have started a GoFundMe campaign to help us cover the costs of our Vivia and Rio’s ongoing urgent and rare medical needs that have recently come up. Please don’t feel any pressure – just wanted to post here in case you want to check it out. Feel free to share also. And above all, please be with us as we are believing for the miraculous, both in healing and provision.

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