Juliette’s Story
Our second daughter, Juliette Rita, was born in October 2001. It was a very difficult birth which had to end in C-section. Her Apgar was 6. She was like a rag doll. Floppy baby syndrome it was called we learned later. After a short time the doctors told us they were at a complete loss as to why she presented this way. So strange that the MDs had no knowledge of PWS.
Feeding her was another struggle. She could not suckle at the breast or any nipple we had. I went to a pharmacy and purchased one of every baby nipple they sold. Only one was she able to get nourishment thru – called strangely the Nuk nipple. She finally began to thrive.
We still had no diagnosis at this point. We had to fight very hard just to get a specialist to see her. In fact, the CEO of my company stepped in to introduce me to an MD he knew. Thru that contact we saw Dr Katzenberg at Valley Medical Center in San Jose. We brought her to see him several times as he ran test after test, all negative. After one negative result he said to us – “Well Juliette does not have Prader-Willi Syndrome. And that’s a good thing cause you do not want her to have that.” Great we thought. Dodged that bullet.
A short time later he referred us to a geneticist. I spoke to him on the phone and he told us there is another test for PWS and he ran that one. He called and apologized but said this test was positive for PWS. We both broke down.
I devoured everything on the internet about PWS and became quite saddened. Not a pretty picture at all. We saw a geneticist at Stanford who prescribed HGH injections. When Juliette turned 8 or so we had to get some kind of drug prescribed for her deteriorating behavior, eg attacking her mother and kicking her grandmother. We were prescribed Abilify and that helped.
But her behavior continued to worsen. We saw a multitude of counselors and psychiatrists about it trying a multitude of her drugs. One psychiatrist recommended the Genesight Analgesic Combinatorial Pharmacogenic Test which purported to determine how Juliette’s body would react to dozens of medications. Using this, the psychiatrist prescribed one medication after another trying for improved results. Nothing worked well. And so it went. Juliette struggled in school and was a serious behavior problem for the staff.
Then we learned of the Latham school on Cape Cod. Focused on the care and schooling of Prader-Willi children. 3000 miles away but if it could help Juliette 30,000 miles would not have been too many. We worked to get her into Latham. It took a lawyer to do it. We got Juliette off to Cape Cod in October of 2019. She was 18 years old at the time. But she was happy to go because all her school friends were leaving for college and we told her this was her college.
Two years later and she is much happier now. Latham takes them on outings often. Once she told us they saw a white dolphin being rescued. Another time Latham took a group of the children to Gillette Stadium to see a traveling exhibit of lifesize dinosaurs. She was thrilled.
Juliette’s life at Latham is finally beginning to blossom. After she ages out of Latham in 2 years she will need to go to a group home. She seems to accept this. But such homes are few and far between here in California. Having learned of the PWHC and the tireless work of the deLones and Steinharts and others we hope that PWGH will be Juliette’s new home.
-George M. Anderson