Thursday, October 7, 2010

Aishah's letter to Shriner

Dr. Peter Sturm
Chief of Staff
Pediatric Orthopedics
Shriners Hospital for Children
2211 North Oak Park Ave.
Chicago, IL 60707

Dear Dr. Sturm,

My name is Aishah Valencia, and I am contacting you on behalf of the family of Huntar and Barbara Gustafson.

I am writing to you at this time to appeal for information regarding Huntar’s case. I realize that you will be leaving Shriners at the end of the month, and that Huntar’s case has been passed onto another doctor. If at all possible could you please help us understand the status of Huntar’s case by addressing the following questions:

• What are the criteria used to determine whether Shriners will perform a surgery or not?
• Given that Shriners advised Huntar’s surgery be performed not much later than mid-September, should we be concerned that the surgery was not performed within the bounds of the suggested timeframe?
• Is there a point at which surgery is deemed to risky for the hospital to assume? If so, have we reached this point?
• I understand that Shriners treats children with rare disorders, including spinal deformities. Being that Huntar is the 3rd diagnosed case in the U.S., the 9th in the world, could his surgery be used to reinforce Shriner’s excellent reputation for groundbreaking research and care?

Quite frankly, our last hope for Huntar’s future well-being lies in the good hands of Shriners Chicago. As I am sure you can understand, Huntar’s family, friends, and well-wishing strangers are anxious about disposition of Huntar’s case. Huntar is from Houghton¬¬, a small town in Upper Michigan. Many members of the community have come together to do what they can to support Barbara and Huntar—emotionally and financially. Articles have been written about Huntar and letters have been sent to the likes of Oprah, Ellen DeGeneres Show, etc. Numerous fundraisers have been held and many avenues have been explored. Shriners Chicago taking interest in Huntar’s case is a saving grace. We are eager to schedule a surgery and would very much appreciate any additional information you are willing to provide on Huntar’s case. Thank you!

Sincerely a concerned family friend,

Aishah Valencia

Thursday, July 8, 2010

Actual T-Shirts and Sweatshirts

Sweatshirts are $25 each

T-shirts are $15 each.

Order yours today by e-mailing
We have limited sizes and numbers so order yours today!

Also, another update.
The day after Huntar's mother recieved a phone call from Grand Rapids, she picked up her phone to hear from Shriners Children's Hospital in Chicago. Her and Huntar packed their bags and headed down to Illinois almost immediately. Huntar had a check up and he will be having his surgery at Shriners in September. We will find out definite dates as it approaches.

We'd also like to thank everyone who donated, shopped and spread the word about the Rummage Sale in Houghton. It was a HUGE success and we had so many people come through. It was amazing to see such a responce from the community.

Thursday, July 1, 2010

Order Your Huntar's Helping Hands Tshirt or Sweatshirt Today!!!!

T-Shirts are $15.00 and have been pre-ordered in sizes: Sm - 2XL

Hoodies cost $25.00 and have been pre-ordered in sizes M-2XL

For more information or to place your order contact Erica:

Tuesday, June 22, 2010


I don't have a lot of information yet, but I did hear from Barb today..... Grand Rapids is going to take on Huntar's case!!!! Another update will come as more information becomes available!!!!!!

Don't forget-

The benefit Rummage Sale in Hancock is happening this Friday and Saturday......

You can "Feed the Pig" at Napa in Houghton to help........

There are cans all over the Copper Country "Change for Huntar"

And very soon, you will be able to order a Huntar's Helping Hands T-shirt or Sweatshirt!

Sunday, June 13, 2010

Benefit Photos

Today marked the end of another successful Benefit Event! However, there is still a LONG way to go before all of the necessary funds will be raised. Here are a few photos from the benefits thus far. Thank you all for keeping Huntar in your thoughts and prayers and for supporting both him and Barb on this journey.

Here are some photos from the Pancake Breakfast:

Here are some photos from the Karaoke Night at Bleacher's Sports Bar:

Here are a few pictures from the Benefit Yardsale in Ishpeming:

There will be information coming soon, but we plan to sell T-shirts and Sweatshirts to help raise funds too! Huntar enjoyed his first time finger painting and we turned his hands into a great logo!

Wednesday, June 2, 2010

Updates and Upcoming Benefits

The Daily Mining Gazette featured a story about Huntar's situation, and a number of benefits are taking place during the month of June across the Upper Peninsula.

June 5: Bleacher's Sports Bar in Hancock- Karaoke Night 8pm-2am, part of the proceeds will go to the Huntar Gustafson Fund

June 11, 12, & 13: Benefit Yard Sale: 117 New York St, Ishpeming. Friday Noon-7, Saturday and Sunday 9am-3pm. To donate or help out contact Amy at 906 225 5594 or Amber at 906 362 4441

Another Benefit Yardsale will be held in the Copper Country the last weekend in June. More information will be coming soon.

This is what I know in terms of an update:

1) Through the power of social networking and folks spreading the word contact was made with a doctor downstate who knows a couple of other doctors who may be able to help Huntar. A copy of the imaging studies done has been sent to them for review. At this point, we are just waiting to hear back from them.

2) Barb's dad has been trying to get to the bottom of what exactly caused the services in Minnesota to be denied. It appears that the insurance was willing to pay a percentage of the cost, but the hospital was not willing to accept that percentage. I believe that there are a few lawyers involved at this point, as there was a question as to whether the hospital was in violation with their Medicaid contract/agreement in denying Huntar's care. Everyone seems to be pointing fingers at everyone else and no formal denial of services has been received in writing, although it has been requested.

3) Huntar seems to be doing well at this point, but we are still looking at any options out there. If you have any other suggestions or recommendations please continue to pass the information along.

Thanks for your continued support!

Friday, May 21, 2010

Huntar's Medical Conditions

(This post contributed by Amy- a friend of Huntar and Barb)

This post is essentially a compilation of information received by the family from the medical professionals who have reviewed the case.

This first section is taken from a letter to Barb from a doctor at the Univeristy of Minnesota Medical Center- Fairview, dated March 4, 2010.

"I had the opportunity to review Huntar's MRI today. He has two conditions going on. He has a congenitally dislocated spine, where one of the vertebrae has slipped off the other one, and he has something called a tethered spinal cord. I have shown you on the MRI today where he has this tight string that is pulling down on his spinal cord. This makes the surgery probably a little more urgent to do sooner rather than later. We don't have to do this today or tomorrow, we don't have to do it next week, or next month, but we should probably do it before the summer time.

The surgery that he needs is several-fold. It involves going in and putting screws and rods and then taking out one of the dislocated vertebrae and realigning his spine. In addition, Dr........., from Neurosurgery will need to open up the spinal sac and release the tethered spinal cord. This surgery will probably take 6-8 hours. He will lose some blood and will need a blood transfusion. He will then be intubated overnight at least and in the pediatric ICU for somewhere in the range of one to three day range. He will need to be flat in bed for that time period, and if I am happy with the fixation we will not have to put him in a cast. We may or may not put him in a removeable brace. I would expect he would then go over to the Shriner's hospital somehwere between three and five days after the surgery and may need to stay perhaps as long as a week but perhaps as short as just a couple of days. "

The letter then goes on to discuss the risks that are involved with the surgery and what the follow up plan would be..... and then it states:

"Also, I want you to know that I have looked at this case and sent it around to one or two of my very trusted colleagues across the country. Everyone recognizes that this is a very unusual condition and everyone generally agrees with the concept that he does need it to be fixed. Everyone is sort of scratching their heads and saying 'well, I might do it this way' or 'well, I might do it that way', but everyone agrees with the general overall approach, and this was before we knew that he had the tethered spinal cord, which adds a little more impetus to the plan of going ahead and fixing it."

This next section comes from a letter dated March 3, 2010 that is correspondence between a doctor at Fairview and the Shriner's Hospital:

"I had the opportunity to see Huntar's MRI and to briefly discuss it with Dr.......... from Neurosurgery. Huntar has a tethered cord. It is interesting in several aspects of trying to figure out how to prove it is tethered because of teh congenital dislocation of his spine. Trying to determine if the conus medullaris is below the mid body of L2 is a little bit difficult, however, he has very tight- appearing fillum that appears to be dorsally stuck over approximately the S2 region consistent with a tethered cord.

I think this changes the already complex nature of the surgery. I think this will require a combined orthopedic and neurosurgical event. I would expect that what we would do would be to expose the posterior elements of his spine, place screws in a couple of levels above and below, perhaps even pelvic fixation, identify the vertebral body to be excised, probably cannulate those pedicle tracks with K-wires and then allow neurosurgery to do the de-tethering. Then, we would proceed with the resection of the dislocated posterior element which I will choose to call L4 and try to reduce L3 onto L5 with fixation above and below.

The biggest change in this game plan is going to be the issue of CSF leak which will be a potential challenge to deal with, and we will have to discuss with Dr......... as to whether or not this would merit a prophylactic upper lumbar drain which may be prudent to do although keeping the child flat in bed will also be challenging. I would also consider potentially a postoperative orthosis of some kind on him to just try to protect everything given the nature of this, perhaps a clamshell with a cutout over the incision by be prudent."

This next section is taken from a report generated by the Orthopedic -Riverside- University of MN Med Center from March 3, 2010:

"CHEIF COMPLANT/REASON FOR VISIT: Huntar Gustafson is a 16-month old male who presents for evaluation of a congenital spine anomaly.

HISTORY OF PRESENT ILLNESS: Huntar Gustafson is accompanied by his mother in clinic today to evaluate a congenital lumbar dislocation at the L4 to L5 level. They had already seen Dr. ...... at Shriner's hospital in St. Louis and have seen Dr........ at the University of Minnesota in consultation for this problem. Huntar is the product of a full term, 39-week gestation and was delivered by C-section. There were no reported complications of the pregnancy. The child has been meeting all of his normal milestones but routine screening of his pediatrician detected a lumbosacral anomaly which was evaluated with imaging studies. The child is still in diapers and does not have voluntary control of his bowel and bladder. He was also recently diagnosed with hemihypertrophy or hemihyperplasia, with a slightly longer right arm than leg, which also contributes to his problems in ambulation. The child is able to pull himself to his feet and to stand unsupported and bear weight. He holds his right leg in an externally rotated positon and is able to walk with some assistance. Otherwise he gets around by crawling or walking on his hands in a bent forward posture. There are no other known congenital anomalies.

1. Lumbosacral dislocation at L4-L5
2. Hemihyperplasia Syndrome
3. Undescended left testicle
4. Congenital left dislocation of hip."

"REVIEW OF SYSTEMS: As noted in the History of Present Illness, the patient has no voluntary bowel or bladder control. Otherwise he has met most milestones in terms of his cognitive and motor development. "

"IMAGING: Imaging studies are reviewed, and MRI of the lumbar spine as well as a CT of the lumbar spine. There is clearly a spinal dislocation at the L4-L5 level. The conus appears to be at the level of L2. There may be some distal tethering of the filum, although it is unclear if this is significant or not.

ASSESSMENT: Huntar Gustafson is a 16-month old with congenital dislocation of the lumbosacral spine, hemihypertrophy, and an undescended left testis. Otherwise, he is in good health. He presents for elective correction of his spinal deformity. As noted above, he appears to have met most of the expected milestones and has good control of his proximal as well as distal motor function. It is not possible to assess his bowel and bladder function at this time."

Why Didn't Huntar Have Surgery This Week????

(This post contributed by Amy, a friend of Huntar and Barb).

As many of you are well aware of, this journey has been a roller coaster ride for Huntar's family and friends. Keeping all of the information in order and trying to get to the bottom of the real issues at hand has been a challenge. Here is the most recent news in regard to the denial of services for Huntar's surgery.

Fairview Hospital in Minnesota where Huntar was referred for his surgery ultimately denied services for Huntar due to the fact that they were not willing to accept the amount of payment that Michigan Medicaid was willing to pay for the procedure. Numerous phone calls by the family to the hospital have gotten us no where, and at this point, voice mails left to those who supposedly can give some answers and provide clarity to the situation have not been returned. The people that the family have been able to speak with at the hospital continually refer the problem to their supervisor or to someone else. All of the correspondence and information being given has been verbal, with no one having the "authority" to provide any written documentation for why the surgery was cancelled and services were denied. Again, the family is waiting for a supervisor for the financial counselor to return their phone calls and hopefully provide the necessary documentation.

The family has also contacted everyone and anyone they can in the state of Michigan, all the way up to the Assistant Director for Medicaid. Again, everyone tells them that they are not the proper person to talk to and refers the matter to someone else, either above or below the current person they are in contact with. Huntar has the Authorization for out of state services for Michigan Medicaid and Children's Special Health Care (CSHCS).

It appears that the State of Michigan Medicaid did not deny coverage, but the amount that they are willing to pay for the surgery in Minnesota is not being accepted by Fairview Hospital. The remaining question with the insurance provided is why are they willing to cover a higher percentage in state than they are out of state? (If this in fact is true, as all of the information in regard to this matter is coming from Fairview Hospital, and no one at this point is willing to put it in writing.)

The questions out there for Fairview Hospital are numerous. Why is the hospital not willing to perform the necessary surgery? It appears to be based on monetary reasons. Are they not obligated under their contract as a non-profit hospital to honor the medicaid agreement and accept the reimbursement rate as given? Why are they not willing to put any of the information or reasons for the denial in writing? Why do they keep giving this family the run around?

The family has contact with a couple of lawyers who are looking into this case. And the doctor and nurse in Minnesota are helping to make contacts with other potential sites where the surgery could potentially take place. The problem is finding a site that has all of the necessary equipment to perform the surgery that also has a a combination of the qualified medical personnel to handle the procedures. The power of social networking has also brought some potential options to the table, as a doctor in Lower Michigan is willing to review the case.

Thank you for your continued support, and additional updates will be made available as more information becomes available.

Monday, May 17, 2010

Spreading the Word and Donations.

Please continue to spread the word to your family and friends in regard to the situation with Huntar. Any thoughts, ideas, suggestions you have are greatly welcomed.

A number of people have mentioned and have begun to contact a wide variety of celebrities and government officials. Please feel free to send them to this blog for more information, and you are welcome to contact anyone and everyone you can think of. At this point, the more people that become aware and can advocate for Huntar, the better.

At this point, we are waiting for "offical" paperwork to come through as to the reasons for the denial of services so that an appeal can be made to the insurance company, and the next necessary steps can be taken.

A paypal account has been created. If you would like to contribute to the Huntar Gustafson Fund, please use the following button:

Or if you would prefer to mail a donation, you can send it to:

Superior National Bank

Attn: Huntar Gustafson Fund

960 Razorback Drive

Houghton, MI 49931

Thank you for your help and support!

Friday, May 14, 2010

Another Road Block.......

Huntar Gustafson was born on October 18, 2008 in the Upper Peninsula of Michigan. He was born with a left hip displacement which was treated with a harness for the first seven months of his life. After the completion of this treatment, a bump was found on his lower back. After further examination and a multitude of medical tests, Huntar was diagnosed with an extremely rare spinal disorder. Due to the rarety of the situation, Huntar was referred to the Shriner's Hospital in Minnesota.

Huntar's spine is separated into two pieces and his spinal cord is tethered. The break in his spine is in the lower section, and this condition has only be documented two other times in the United States, nine times in the world.

Huntar has been travelling to Minnesota to meet with doctors at the Shriner's Hospital and at the University of Minnesota's Children's Hospital, Fairview. Unfortunately, due to the limitations of the health care insurance, the surgery he requires will not be covered merely because Huntar resides in the State of Michigan, and the only surgeon who has previously performed this surgery is in Minnesota. The insurance is only willing to cover 17% of the $150,000 if the surgery is performed out of state. If a doctor can be found in the state of Michigan, they will cover 80% of the costs. Unfortunately, a payment plan is not an option with the University of Minnesota, and we do not have the financial resources to cover the expenses. It is unclear that any of the facilities in Michigan have the necessary equipment or that any of the doctors in the state are willing or have the expertise available to complete the surgery.

What has been most frustrating is the fact that the state previously gave pre-authorization for his treatment in Minnesota, and have now reduced that authorization to a minimal percentage, only a few days prior to the scheduled surgery. Huntar is a growing boy, and it is estimated that the surgery must take place prior to his growth of approximately one more inch, or the possibility of paralysis may set in. Time is a major factor, and we are beginning to run out of options.