Join me this week as I give some updates on where we are in the process of getting the second medication we so desperately need for our kids, knowing when to call in the "big wigs" and the importance of celebrating every single little inch-stone our children make!https://www.confessionsofararediseasemama.com/https://www.saveromanandstella.com/Follow on instagram: @confessionsofararediseasemamaI'm in TikTok now! @rare_mamahttps://www.confessionsofararediseasemama.com/Learn more about my children's fight with ASMD and donate to our cause:https://www.saveromanandstella.com/Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/