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Sydney mum Maddyson Brown has shared the bucket list she created for her daughter Lacey who has a rare and life-limiting genetic condition…

When Sydney mum Maddyson Brown gave birth to her second daughter, Lacey, five months ago, she had no idea that her baby girl had a rare genetic complication that would limit her life The Sun reports. In an attempt to make the most of the short time they have together, Maddyson set about creating a special bucket list for Lacey and it’s enough to break your heart…

A Devastating Discovery

It was suspected that Lacey was deaf at birth, but that was just the beginning of a nightmare for the Brown family. “We took her to the doctors to get checked and they said she had a virus she would get over, but the cough continued and we noticed her breathing was unusual,” Maddyson told The Daily Mail. After further tests, Lacey was diagnosed with Type 2 Gaucher Disease, a rare condition that causes the organs to enlarge and eventually stop functioning altogether meaning she may not survive beyond two years of age. “Time is not on our side,” Maddyson said. “We would like to have as many memories as possible with our baby girl.” The family began compiling a bucket list for Lacey and are ready to start ticking off each experience as soon as Lacey is allowed to go home from the hospital with the help of a breathing machine.

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Making Memories

Maddyson and her partner say that the process of making the bucket list has helped them cope with the diagnosis. “It rips my heart to pieces to say it out loud, but it could help us comfortably say goodbye to our precious baby girl.” Despite the stress of expensive ongoing treatment and the heartbreaking possibility of losing their daughter, the family are determined to make as many memories as possible. “This disease is horrific and she does not deserve this cruel fate,” Maddyson said. “All we can do is enjoy our little girl while we have her.”

For more information about Gaucher Disease visit The Brain Foundation website.

Have you created a bucket list or helped a family member make theirs? Share your story in the comments.

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  • its such a hard thing to deal with but they are the parents that were gifted this beautiful child and even though her time here might be short she brings so much love with her and their lives are blessed and all the better for knowing her and having her in their lives.

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  • That is so sad :(

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  • How brave on them to focus on the time they have with them and not focus n the time they won’t have together. An awesome idea, creating lasting memories

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  • How terribly sad. She is a strong woman and I admire that strength. I love the idea of her doing a baby bucket list, making the most of her time with her precious little baby.

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  • I admire their strength, I’m sure so many would be too devastated to do anything but worry or sink into a depression.

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  • Oh gosh this is just so incredibly sad. Hope they make lovely memories together.

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  • Poor little darling. Sometimes life just isn’t fair. I hope they make many wonderful memories together.

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  • that’s horrible! I don’t know if I could cope with this but it’s beautiful that through their pain they’re going to make her life special.

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  • What a beautiful thing to do to help the family through this.

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  • What a sweet baby. Such a sad journey that this family has to face.

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  • So sad to have to do a bucket list for a baby or child. I feel for this beautiful family trying to make the best of the time they have with their bub.

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  • So sad for one so young to have a bucket list. I haven’t done one before but perhaps I should, we never know when our time will be up.

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  • My heart broke when I read what Lacey and her family have to face. I hope the bucket list will give them some wonderful memories of their time with her. I can’t imagine what they are going through and I wish them love and prayers for a miracle. Enjoy what time you all have together as a family.

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  • I couldn’t imagine that to happen to my children. May the bucket list fullfill their dreams of creating special memories with their daughter. God bless your daughter and your family’s

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  • Dear Maddyson. I have read your heart rendering description of the disease that seeks to end Lacey’s young life. I have lifted her up to the LORD for total and complete healing. I am believing for a miracle for your dear little girl and wait with anticipation for a miraculous result. Stay positive, believe and see her healed. I have no doubt that the one who created her can totally heal and restore her health. Do not give up hope, for Lacey’s sake. Stand in agreement with me, do not waver, for the one who created her and all of us, cares for her more than you will ever know. Have faith and be strong, the both of you. I will continue to lift Lacey up and stand in the gap for her. I pray blessings and peace of you and your family, especially Lacey. Be still and know that He is God.

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