Leland's story

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Leland is my 9 month old baby boy who was diagnosed with Menkes on March 4 2016 he was born with low body temp crazy kinky hair light skin pigment skull deformed and very loose skin. At 8 weeks ago he started having ear infection and just constantly sick week after week.in and out of the hospital.  We were finally hospitalized with croup feb 26 2016 amd told them I was not leaving till we figured out whatbwas wrong with my child. Leland does not sit up roll over lay on his tummy or want to use his legs. During thst stay we ended up with a g tube and have had feeding issues every since. We made a trip to Maryland to start a clinical trial with dr kaler at nih to start copper histidine injections.  We started those March 23rd.  

Edited 

We did start  the histidine  but found that Lelands  Gene  mutation  wasn't  compatible  with it so we stopped it and started copper chloride  instead  and has been on it for 6 months now and is doing great.