A 9 year old with a heavy heart, worry and pain~ Please intercede!!!

We all have some heavy burdens at times. Sometimes I question them or why someone else's is so much heavier than mine. Today my heart hurts for a 9 year old boy who is worried about his brother and sister staying alive.
He is an amazing kid, an awesome student, he loves his family so much. He has a wonderful mother and father and I mean wonderful! He has 3 siblings , two of which suffer from a terminal illness called Sanfillipo Syndrome Type A. And then he has another brother that his parents adopted (because like I said they are wonderful) The strong marriage that his parents have is what makes this family be able to conquer their daily struggles. We went to visit them this weekend and everyone had such a great time together but when its time to leave them it is very hard because of what you know. You just want to stay and love on them. So imagine never leaving and being with them all the time. If you are their older brother you worry alot. Below is a story he wrote last night after we left and emailed it to his mom at 2:30 in the morning: 

                                   The Wonders of God

The parents came home devastated the children confused but still comforting the parents offering medicine and help making dinner and clean the house it was midnight when the parents went to bed very sad and depressed the kids sad for them in the morning at exactly 6:00 the phone rang the kids were listening or trying at least to hear what was going on in 1 hour the oldest and only one who could read knew what was going on the kids rushed into room. 4e there in bed was there sick brother the only brother with sanfilippo but not the only sibling he was coughing and crying but still hugging his family his sister laela also affected by the life threatening disease was also sick but not quite as much as Ryan jalen the oldest of the children was upset and crying and praying for Ryan and laela and their lives alongside his little brother Justin who was very very sad and crying eventually the nurse came in and said "we will need to do surgery on both of them and if the surgery works out they will both live so do you agree with the surgery "and the parents Allison and Edwin nodded their heads vigorously their faces damp with tears by 4:00 that evening one surgery was done then at 8:00 Ryan came out of the room jumping and having fun with everyone but that was not the end of the streak of good luck the president of vivnt called and told them their story was so touching they decided to let them win instantly and 7 days later the family found 4,000 dollars in their backyard and with that money they bought confort items and toys for everyone and they had fun for months with the new things and the boss at the fathers work was feeling genorous so he let Edwin take the year off and the Baldomero family had fun for years

The End~ Jalen Baldomero

No one should have to worry like this and his dream is too see his brother and sister LIVE! 

You cannot even imagine the life they lead every day as they care for these two and they all do it with a smile on their face and hope in their eyes. 

Would you please keep Jalen along with his brother (Ryan) and sister (Laela) on your nonstop prayer list.

Ryan Baldomero ~8

Laela Baldomero ~4

Jalen Baldomero ~9 with his sister Laela ~4

The Baldomeros

Sanfilippo Syndrome

Sanfilippo syndrome is metabolism disorder passed down through families. It makes the body unable to properly break down long chains of sugar molecules called glycosaminoglycans (formerly called mucopolysaccharides).
The syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS).
Specifically, it is known as MPS III.

Sanfilippo syndrome occurs when the substances (enzymes) needed to break down the heparan sulfate sugar chain are missing or are defective.
There are four main types of Sanfilippo syndrome, also called MPS III. Which type a person has depends on which enzyme is affected.

• Sanfilippo type A is the most severe form. Persons with this type are missing or have an altered form of an enzyme called heparan N-sulfatase.
• Sanfilippo type B occurs when a person is missing or doesn't not produce enough alpha-N-acetylglucosaminidase.
• Sanfilippo C occurs when a person is missing or doesn't not produce enough acetyl-CoAlpha-glucosaminide acetyltransferase.
• Sanfilippo D occurs when a person is missing or doesn't not produce enough N-acetylglucosamine 6-sulfatase.
• The syndrome causes significant neurological symptoms, including severe retardation. IQs may be below 50. Most persons with Sanfilippo syndrome live into their teenage years. Some patients live longer, while others with severe forms as die at an earlier age. 
• Symptoms appear most severe in persons with type A Sanfilippo syndrome.
• There is no cure currently 

 Lord,

You know Jalen. You know the burden he carries. You also know his heart. Lord, we ask you to be with him now as you work in his life. 
Lord, we pray for Ryan and Laela just as your Word tells us to pray, for healing. 
Lord, I don't always understand your ways. I don't know why my friends have to suffer, but I trust you. I ask that you look with mercy and grace toward them. Nourish his spirit and soul in this time of suffering and comfort him with your presence. Amen

Psalm 41:3

The LORD sustains them on their sickbed and restores them from their bed of illness.