LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

What is your experience with LAL Deficiency?

We look forward to hearing your story.

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Permalink Reply by Mary Pruitt on March 29, 2011 at 6:11pm

My sweet son Gage passed away from Wolman's Disease on July 7, 2009. He was diagnosed when he was 4 months old and started his bone marrow transplant shortly thereafter. Gage was such a fighter during his transplant and his numbers all started looking great. After living in the hospital for a few months, we moved to the Ronald McDonald House and lived there with Gage and our daughter Emily. Less then a week before we were going to get to move back home to Alabama, Gage developed an infection in his central line. We were heartbroken when Gage passed away after 9 days in the PICU. Before and after Gage's diagnosis, my husband and I searched day and night for information about Wolman's Disease. We were so discouraged not only with the lack of information, but the lack of any kind of support group. We hope that by starting this website, we can create a place where patients and families can come for information and support.

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Permalink Reply by Karen deJong on April 12, 2011 at 10:17pm

My little girl Amy is 19 months old. Most people don't notice there is anything wrong with her. We started wondering if there was something wrong last fall. She used to be more chubby and when she started walking at 14 months she lost all her fat. Except her tummy. I took her in to her pediatrician in Jan- was referred to a GI Pediatrician. And after 3 months (the tests took forever) we got the results -CESD, not Wolmans. We have been working on a low fat, low cholesterol diet for a week now. We can't totally lower her fats yet- she is way to young. The Dr said we could probably put her on cholesterol lowering drugs at age 3 or 4. I have a hard time believing that her liver can last a long time. Its the size of an adults- how long can it grow yet? Nobody has any answers of course. Knowing she already belongs to the LORD is our only comfort. She will go to Him in His time. And He does all things for our good.
I would love to hear from others who are facing the same struggles as we are... It seems so hard to face a disease knowing there is no cure. Hoping one will come some day. I would love for Amy to live with us a little longer.
Thankyou Mary for putting this website together! I hope more people can hear about it.

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Permalink Reply by Stephanie Dykes on April 14, 2011 at 1:44pm

My sweet boy, Dakota, was diagnosed with wolman's disease at 7 weeks old. He touched so many lives in his short time here. He was such a sweet heart and fought such an awful battle. Our ultimate plan was to get a bone marrow transplant but his little body was not able to do so. On December 11, 2010 he took his last breath in my arms and his body couldn't fight anymore. One of the worst feelings about being diagnosed with a disease like Wolman's is that there is very little information and as a parent you feel that you are failing your child. I pray that no one has to experience that feeling of being to so secluded with this disease as I once did.

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Permalink Reply by Mary Pruitt on April 14, 2011 at 1:50pm

What a beautiful picture of little Dakota! I am so glad you joined:) Mary

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Permalink Reply by Karen deJong on April 14, 2011 at 4:04pm

thankyou for sharing Dakota's story.

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Permalink Reply by Margi moakes on June 10, 2011 at 6:33pm

My sweet little baby girl Lili died of Wolmans disease August 25th 2006 aged 8 and 1/2 months. Lili was diagnosed at the age of 7 and 1/2 months. It took me 6 months to get doctors to even listen to me that there was sometime wrong with Lili. As soon as she was diagnosed she started her work up for a bone marrow transplant. Lili became very ill 5 days in to her treatment and was transferred to ICU where she had her transplant but 5 days later became very ill and she lost her fight. When doctors first mentioned the possibility of Wolmans disease I had no idea what they were talking about. I immediately searched the Internet to find out more. It was the only place I could find out more as it is so rare. Information and support was none existence, 5 years on I am so glad to have found this site. Being able to share with others that know what our babies have been through is comforting. I hope that this site provides comfort, support and information for other.

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Permalink Reply by Melissa Aguilar on November 30, 2011 at 11:28am

What a sweet little boy. Simply Adorable! I am sorry for your loss.

Stephanie Dykes said:

My sweet boy, Dakota, was diagnosed with wolman's disease at 7 weeks old. He touched so many lives in his short time here. He was such a sweet heart and fought such an awful battle. Our ultimate plan was to get a bone marrow transplant but his little body was not able to do so. On December 11, 2010 he took his last breath in my arms and his body couldn't fight anymore. One of the worst feelings about being diagnosed with a disease like Wolman's is that there is very little information and as a parent you feel that you are failing your child. I pray that no one has to experience that feeling of being to so secluded with this disease as I once did.