This is Jamil's Story.

I want to start by saying that I am thankful that you are reading what has happen to my son Jamil up until this point. I am grateful no matter what that I have him in my life and I will do whatever I need to in order to help him and others like him. Thank you.

When Leigha Hoffner was pregnant with Jamil it was a very difficult time for them. Leigha and Baron had just lost a baby due to an ectopic pregnancy. While finishing blood work to make sure that the pregnancy had fully dissolved, Leigha found out she was pregnant again. Although they were happy they were also scared and surprised. This pregnancy brought about many problems for them. From the very start there was constant bleeding and the fear they were losing this one as well. However, it was apparent very early on that Jamil was a fighter.

Leigha was diagnosis with Gestational Diabetes that went from diet controlled to medication being needed within a matter of weeks. She was also told she had oligohydramnios which is when there is too much amino fluid. The doctors also noticed that Jamil was gaining weight more rapidly than he should be. The decision was made to induce Leigha at 36 weeks.

When Jamil was born Leigha and Baron noticed that something just wasn't right with him. Although he had all his fingers and toes, his appearance didn't sit right with them. They noticed little things like his ears not fully developed, his big toes on each foot were hyper extending, he had a sacral dimple, he wasn't moving his tongue off the roof of his mouth, and he had a pigment problem on his belly.

Leigha and Baron began asking the doctor what as wrong with him, only to be told he was fine and all those things would fix themselves. Not understanding they trusted his doctor. However, after several months they noticed that Jamil was not developing like he should be. He was three months old and wasn't able to hold his head up or even trying, he couldn't roll over, and when placed on his stomach for tummy time he couldn't move his head to the side. Leigha took Jamil to the local WIC office one day and was told that Jamil was Failure to Thrive, and that she needed to take him to the ER right away. Leigha took him right to the doctors office. The doctor told her he was but he was fine we would just have to monitor him closely.

Leigha and Baron began to feel as though the doctor was blowing Jamil off and didn't want to deal with him. A month later at his next appointment he was the same thing. He was as if he was a newborn and couldn't do anything. The things they told them would fix themselves hadn't and Jamil was screaming all day everyday.

They continued to take him to the doctors office and the doctor continued to blow them off calling Leigha over protective and paranoid. But by the time Jamil was 8 months old he hadn't changed. He was still unable to lift his head, roll over, and move his head during tummy time. That was when Leigha and Baron went to his office and told the doctor they weren't leaving until he did something for their son.

The doctor agreed that something was wrong and that Jamil needed therapy. So he referred them to Children's Hospital for physical therapy. By this time the parents were noticing that Jamil wasn't feeling pain in a normal way. When Jamil would try to lift his head he would bang it on the floor hard and wouldn't respond to it whereas he should have cried. When the nurses took his blood he didn't cry, when they checked and pulled at his circumcision and made it bleed he didn't cry. When Leigha asked the doctor about it he again blew her off.

Leigha finally got Jamil to therapy and began asking the therapists about the lack of response to pain. She and an occupational therapist did several tests on Jamil and diagnosis him with Sensory Integration Dysfunction-Proprioceptive Dysfunction, where is a sensory seeker. After a year of therapy at Children's Hospital he was referred to Early Interventions Program.

Therapy in the home with a PT, OT, ST, DT, and nutritionist began. The efforts that these wonderful therapists made were incredible. Jamil started with them unable to sit, stand, or walk when he was 1 1/2 years old. Within months of working with him Jamil was standing, crawling, rolling, and sitting. Then one day a couple of months before his 2nd birthday Jamil stood up and walked for the first time. This was something that his parents never thought he would ever do.

They were so proud of him. Although watching him was more difficult because they had to make sure that he didn't hurt himself because of the lack of pain sensation. But Jamil did well. His parents however, began to notice that Jamil wasn't gaining any weight. He was at this point 31 lbs. and 36 inches. For the last 3 visits he hadn't gained any weight. The doctor once again said it was nothing. His parents tried to tell his doctor that they weren't able to feed him because of his strong gag reflex. The doctor said to put cereal in his bottle. That was the last straw for this family.

Leigha and Baron began looking for another doctor. After 9 more doctors who were the same way, they were surprised that they found Dr. Conway. She was willing to test him for any and everything. Leigha brought her a list of things she wanted her son tested for. Leigha had done her own research into what could be wrong with Jamil and came up with two pages that fit his symptoms. On that list was Abetalipoproteinemia. Finally, after 2 plus years of not knowing what was wrong with Jamil they found that he did in fact have Bassen Kornzweig Syndrome.

Jamil at the same time was diagnosis with VSD. The cardiologist was sure that his heart would heal on its own and to just wait. However, the vitamins needed for Bassen Kornzweig could affect his heart and therefore it was not recommended that he start them, but it was also not recommended that anything at this point be done about his heart. So once again, Jamil was being left without anything being done.

Dr. Conway however, could not do anything else for him so she quit on him. Jamil's parents are now looking for another doctor that will be able to actually help him. Leigha and Baron feel as though something can be done about his heart, he is very symptomatic; he gets short of breath, pants, and fatigue. They also feel that something else is wrong with Jamil. He is now three years old and is not talking. His hearing has been tested and been diagnosis with CAPD. However, Jamil has not gained weight since September of 2007. He is still currently 31 lbs. and 38 inches. Jamil does eat now, not like he should but it is better. He is also waking up every couple of hours during the night and has never slept through the night. Jamil is also showing signs that his gait and stability are getting worse. He is also showing signs that he is forgetting things. He was once able to say mama and dada and now he can't. He is learning how to use ASL but again he is forgetting signs that he uses on a daily basis. He was also diagnosis with Retinitis of the left eye.

Leigha and Baron are asking for anyone who has experience with special needs babies and or these types of issues to please help them. Jamil is currently covered by the Illinois Medical Card. Jamil is not taking any medications, and is in need of help. If you are willing to dedicate your time to help him, further test him for what else is going on with him, and not give up on him please contact his mother and father HERE

September of 2009 and Jamil still has not gained any weight. He is currently not talking and is doing great with ASL. However, Jamil this month experienced 3 days of not being able to walk. It happened suddenly one hour he was fine the next he couldn't walk and then 3 days later it went away as fast as it happened. The ER told us that this was just a look into what will happen to him in the future. Please my son needs help and he is not getting it. If you can in some way help we would appreciate it.

November 2009. I was finally able to get Jamil's medical insurance straightened out. He is now able to go to anyone we want. He is currently being seen by Dr. Ochs from Children's Memorial Hospital. Jamil saw him on November 2, 2009 and I as a mother have to say that everything we have been through with all these different doctors he amazed me. Right away Dr. Ochs showed me his children and that they were special needs. He also knew right away that something was not right with Jamil. He started over with him. He ran complete blood work, ordered all types of tests, and is going to reconfirm his current diagnosis. He doesn't however agree with the VSD but does think something is wrong. We are also being sent back to Dr. Angel the genetics specialist at Children's who Jamil saw when he was younger. I am so happy. Maybe now he can get some real help.

November 2009. Jamil finally went back to the eye doctor and we got a second opinion as to the retinitis in his eye, the new doctor said he doesn't see anything wrong with his eyes except being far sighted. He did state that he is unable to tell us when he might develop it because each case is different. For this we are trully blessed.