Riley

Our daughter Riley is 10 months old.  She has several serious medical conditions.  We first found that she has three kidneys and hydronufrosis which will require surgery some time down the road.  A month or two later the doctors found a 9mm ASD or hole in her heart, which may also require surgery.  Then when she was about 5 months old we noticed that she still wasn't holding her head up or acting like an average 5 month old child.  We told her pediatrician and that began a 5 month process of different types of testing.  In these 5 months she did learn to hold her head up at about 8 months and months just recently began to roll over. The final test was a genetics test about a month ago.  the results came in and found that our daughter had a very new and extremely rare disorder.  She was diagnosed with Genoa Syndrome.  She has one extra X chromosome and is missing genes from chromosone 1.  This is what has caused all her health conditions and the developemental delays.  This syndrome will also cause her to behind physically and mentally for the rest of her life.  We do not know how severe this syndrome is or will be. The doctors said that she eventually learn to walk and talk but it could take several years.  She will also require very frequent physical therapy. We are doing this fundraiser to raise fund for whatever intense therapy she may require. We are young parents who want to make sure all her needs are met.