Sandhoff Disease

Kids websites

 

You have reached our most important page of our website... the children!

These little ones listed below are all so special, please take the time to enter their websites and read their life stories. They are all true angels, pure in every sense of the word - and all have strength, will and determination that most adults in this world could never imagine having.

Please let us know if you would like your child added to this page. Email me at gmwatkins74@yahoo.com and I will get him or her added right away. It is so important to make others aware of how many children are suffering, or have suffered from this disease. Sandhoff is real and is always fatal - it may be rare but to these families it isn't rare enough. Sharing your story could help others that are just getting their diagnosis.

 

 

Eric Conchiolo is now in Heaven  Click here to visit Erics website

Amanda Callagy is now an angel of Juvenile Sandhoff Click here to visit Amanda's site

Clayton Mulligan is now in Heaven Click here to visit Claytons site

Joey Mulligan is now in Heaven Click here to visit Joeys website

Conner Watkins is now in Heaven Click here to visit Conners website

Gemma Danielle Lea is now in Heaven Click here to visit Gemmas site

Isabella Hernadez is now in Heaven Click here to visit Isabella's site

Rebecca Robson is now in Heaven  Click here to visit Rebecca's site

Hannah Degroot is now in Heaven Click here to visit Hannah's site

Riley Luce is in heaven now Click here to visit Riley's website

Zachary Bloomfield is now in Heaven Click here to visit Zachary's website

Zach Gibson is now in Heaven Click here to visit Zach's website

Preston Chase Click here to visit Preston's website

Brooke Krista is now in Heaven Click here to visit Brooke's website

 Lilianna Aurora Owsianyk-Foster is now in Heaven Click here to visit Lilianna's website - Below is Lilianna's video!

 

Hayden Smith Click here to visit Hayden's site

 

 

Abigail Jean Ledsham is now in Heaven to contact the family by email please click here to visit Abigails website please

click here

 

Theodore "Teddy" Naemyd Schwei is now in Heaven

to read more about the book his family wrote in honor of him click here

Cheyenne Noel Norcross is now in Heaven,  to visit her website click here

Bubby Valyou is now in Heaven, fly high little man

Karah Buchanan is now in Heaven, chase the ladybugs little lady!

Julie Hjelle Saeter lives in Norway! to email her family click here

Madison Grace Perreault is now in Heaven click here to visit her moms myspace page

Colton Grissom. He was born 10/21/2003 

 

Kacee Reese Lather is in Heaven now. To email her mom please click here 

 Below is Kacee's video!

Shane Medrano is in Heaven now, to visit his website please click here

His mother also has a web blog, to visit that please click here

 

Emily Koltonski in now in Heaven. Emily was born 5/30/04. To visit her website please Click here

you will have to create a username and password (but then you can have access to the other care pages sites that are listed on here as well) her site name is AngelEmilysJourney

 

Teresa Villalpando lives in Arizona, to email please click here and to visit her myspace page please click here

 

Dominic "Nico" Edmonson is in Heaven now. Please email his family by Clicking here. Nico was born 3/14/2004 and entered into rest August 17, 2008.

 

Meet Vanessa! She is newly diagnosed, and her family would like to meet other families affected by Sandhoff. Please contact them by clicking here //

A touching story of a tiny life

Maanas is an angel of Sandhoff disease - this is his story, We remember it all like it was yesterday Maanas joined us on 29-Jul-03. Mrudu (My Daughter) was so excited about her baby brother and she planned so many things that they will do together. Maanas was a cute and adorable little boy always smiling and with so much of love for us. He always enjoyed the company of  Mrudu. Everything was going on so well he was achieving all the milestones until we went for his 9th month check up when the doctor was a bit concerned that he was not sitting upright. His back did not seem to be that strong.  We were worried when he could not stand with support even at 11 months. The pediatrician referred us to Neurologist.  From there on all the struggle started. By the time Maanas turned 13 months old we got the results that his brain did not develop to the extent it should have been. His eyes had cherry red spots which is turning him blind and all the nerves are getting weaker. Maanas was finally diagnosed of disease SANDHOFF. . Never heard of anything before. The doctors explained us it  is a rare, genetic, lipid storage disorder resulting in the progressive deterioration of the central nervous system. It is caused by a deficiency of the enzyme beta-hexosaminidase, which results in the accumulation of certain fats (lipids) in the brain and other organs of the body . Death usually occurs by age 3 and is generally caused by respiratory infections. From then everyday passing by was scarier. It was not easy for any of us to see his deteriorating conditions. We had to worry about Mrudu too since she was witnessing all these at such a tender age. When Maanas turned 18 months things deteriorated further he was ceasing a lot and was just lying there in his own world. It was very hard for all of us to see him dying  everyday. Maanas did everything he could to live with us as long as he could fight the disease. But finally on 26th-Jul-07 he gave up when the heart became so weak that it could not pump the blood and instead was getting into lungs. He passed away at 1:00 pm peacefully with a smile on his face. We salute our little trooper.


With Maanas’s conditions at home we could not keep in touch with all of you. We hope you will understand our situation it was not intentional. Thanks for the support of all those  who helped us at the time of the need.

-Shailaja,Srinivas

please email me at any time

shailajadatla@msn.com

In memory of Maanas
...

A little more about Abigail Ledsham

DOB: 18-10-06

She was a planned pregnancy and i had secretly hoped for a girl. She came into the world at
about 3pm and we were so thrilled she was a girl and she was perfect. She was a difficult baby, not sleeping and wanting our attention all the time. But she was worth it all. She suffered with wind and constipation since birth and we had noticed she was a bit squeeky when asleep (later diagnosed with stridor). She was just like any other baby, developing fine with no apparent problems. At about 5-6 months of age I got diagnosed with post natal depression, probably due to the lack of sleep. The health visitor came out frequently and it was at one of these visits she noticed Abigail wasn't holding herself right and the fact she hadnt started to sit on her own,so she said she mioght benefit from some physiotherapy. She had to refer to a Paedatrician first to get referall to physio. So it went from there, doctors, physio and not gaining any new skills and she seemed a bit slower than any other baby her age. In about the August the dr said she would send her for a brain scan just to rule things out. She explained she may have had a bit of brain damage at birth from lack of o2 or had a little bleed in the brain, but for us not to worry as the brai is very good at re-wiring itself.She had the scan in September and we got the results on 9th October 2007. She told us it was a Metabolic Disease, but needed blood tests to see which one. She fully explained what this meant and that it would probably be terminall. We were in bits, my mum was here with us as they live in Spain but my dad was on his own out there. He took it really bad and I dont know how he got the flight back home the next day. That night we learned that Pauls cousin had had a baby that had died of a Metabolic Disease and it was "Sandhoff".(Gemma Lea was her name and she is on your website) This was the first time we had heard of it and obviously went straight on the internet. The information could have been written about Abigail word for word. All the symptoms etc. was her. We knew then that she also had Sandhoff. We rang the dr next day to tell her and it was one of the blood tests she was already having. It was Monday 22nd October 2007, 4 days after her first birthday that we got the results and it is the day our world came crashing down.Because up until then we had some hope, now we had none.Since then everything is happening so fast. They ,put PEG in in January when she was well, because she would eventually need it and the fits started in February. She was in hospital for 3 weeks and she is not the same baby sge was before. She had repeat MRI scan and it showed the disease is progressing a lot faster. She sleeps most of the time,has lots of fits, is totally PEG fed, doesn't appear to be able to see or hear. She is slipping away.

A mothers story about Isabella Klag, an angel of Sandhoff

Isabella Giovanna Rain Hernandez was born on June 26th, 2003, but it wasn’t until March 13th (just three days ago) that our beautiful baby girl took her first steps.  For the first time, Bella (as she was known to us) ran…. she giggled, she played, she twirled around in all the pretty dresses her mommy always put her in, she tapped her toes and fed herself and she probably even through a fit.  When she got to heavens gate, she was greeted by her sister Ashley, her aunt Cordelia, her cousin Dominic and all the other angels that have gone before her.  We find comfort in the fact that Conner (another child that died from this dreaded disease) came for her exactly one year ago to the day that he lost his battle to Sandhoff’s.  The parents of these children call it, “the day they got their wings”.  Well, Bella got her wings, she’s free to fly!!

 

Let me tell you a little bit about Isabella.  Since the very first day she was born, we all knew that Bella was special.  What we did not know, was how special.  That was to come later.  As the months started to go by, it became apparent that Bella may have some kind of handicap.  This only reassured Connie and Robert that they would have to love her more, and this they did with all they had in their hearts.

 

It was in the fall of 2004 that we received the news that Bella was possibly blind, although this was horrible news, Connie and Robert knew that Bella would see the world through their eyes, she would not want for sight, for she would see all things beautiful through them.  Well, still that was not to be the worst of it.  This child was destined to teach us all a lesson, which, for me, was a true appreciation for all that the good Lord can give us, and so quickly take away.  Just a few more months passed by and Bella was diagnosed with Sandhoff’s disease, this is when we knew we would not have her with us long.  So Connie and Robert went on a mission.  They were going to let Bella experience all that they could in the short time that she had left.  They took her swimming, camping, swinging in the park, once she almost got to ride on a boat.  Did I mention that Bella was the most photographed child in Colorado?  Connie had pictures of Bella taken every month of her precious life.  She did this before she even knew about Bella’s illness.” Things happen for a reason”?

 

Bella was taken from us entirely too soon, but in the short time she was here, she taught each and every one of us what true will and determination was all about.  And we saw what unconditional love was through her parents, Connie and Robert.  They were relentless in their desire to show Bella love, compassion, comfort and dignity, not only her entire life, but especially in those precious last hours.  We saw the selflessness of a mother that loved her child enough to let the Good Lord take her when he came a calling.  We saw the love a man that held the mother of his child and comforted her even when his own heart was breaking.

 

Now, Bella is in heaven and today we are not here to weep for ourselves, we are here to celebrate the beginning of Bella’s new life, the one that allows her to dance and skip; to smell the flowers; to hear the birds chirp; to feel the warmth of the sun; and to see the brightness of the moon and to wish upon a shooting star.  Right now, Bella is having conversations with the other angels in heaven and she’s telling them how lucky she was to have had so much love while she was lent to all of us.  Connie and Robert must know that someday they will see Bella again, in all her wonder.  And that although they were blessed to have been the chosen ones for Bella, it was truly Bella that was Blessed to have been the chosen one for them…

 

Good Night Beautiful Girl, Sweet Dreams!!!

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